Ron Panzer wrote a great article, entitled "Shame" for the Hospice Patients Alliance and it was so fitting for how hospice patients can experience shame. I am going to share the parts that were most reflective of the hospice experience...
"At any stage of life, shame has many faces.
If you've ever cared for the elderly, severely disabled or the chronically ill, as I have, you know the look, the unspoken shame. Shame at being naked before another who is not a lover, not a parent, not family. Shame at being other than what you once were. Shame at being unable to do the things you used to do or that others do. Shame at needing help to stand, needing help to sit, needing help to eat.
The strong young man with strapping muscles now stumbles to walk even one step. The beautiful woman's face becomes wrinkled with age...she wishes for the days gone by, when men could not take their eyes off her, when desire filled her heart.
Shame arises when a person feels they are "less." Less than what they once were, what they wanted to be, what they should be. Shame is felt when a person is treated as less than what they still are, a human being.
Shame flees from a caring heart, a gentle touch, a wiped tear, a cleansed body, a smile."
I felt like what he wrote about shame was very true. Hospice patients may feel shame, but their caregivers and family members may also feel it too. They may feel horrible for making the decision to put them in hospice, deciding to stop all treatments. Caregivers may feel shame because they may believe that enrolling them for hospice services may be "killing" their loved one. Adult children may feel shame in putting their parent in hospice at a nursing home or inpatient hospice facility because they do not have the time or resources to keep them at home.
Saturday, August 9, 2008
End-of-Life Comfort Care
In the same article on the Live Strong website was information about keeping your loved one comfortable. People in the last stage of life may become easily agitated and restless. Things you can do for the patient can include:
- keeping the light low and soft
- playing soothing music
- reading books aloud to them
- sit in silence together
- make sure your hands are warm before giving them a bath
- gently massaging their hands and feet
- making sure their lips and mouth are moisturized
If your patient is able to make decisions for themselves, let me give you their input about food, activities, and visitors. You can do the same things above, but give them choices. For exmaple, when reading aloud to them, ask what they want to hear or if they want the blinds open or the lights off. These abilities to make small decisions will make them feel important and provide comfort to them. Making some of these decisions for them may only agitate them more.
Caregiver Organization Tips
I found some helpful tips for caregivers on organizing when searching on
Live Strong, the Lance Armstrong website. If you are a caregiver, doing some of these suggestions will reduce your stress and will help you stay organized. It can be overwhelming to keep track of medications, symptoms, and other information as well.
Caregiving is 24-7 job that never ends. Even when you are away from your loved one, you may be thinking about what's happening and may be very distracted trying to get your own tasks done. If you begin to feel frustrated or depressed, you may need to get respite care, so the situation does not become uncomfortable or threatening. Respite is a service where you can take that person to a facility or a professional caregiver can come in to relieve the caregiver of their duties.
So, the first tip is to write down a list of helpers that can be called on if necessary. Make a list of relatives, friends, neighbors, hospice volunters, church members, and paid professionals who can offer assistance. Write down their name, telephone number, e-mail, hours/days available, and what they can assist with.
Another helpful tip is to keep a notebook or binder available. Keep it in an easily accessible place so other people can find it if you are away from the place of care (home, nursing home, etc.). The notebook will be an easy way to keep track of:
Live Strong, the Lance Armstrong website. If you are a caregiver, doing some of these suggestions will reduce your stress and will help you stay organized. It can be overwhelming to keep track of medications, symptoms, and other information as well.
Caregiving is 24-7 job that never ends. Even when you are away from your loved one, you may be thinking about what's happening and may be very distracted trying to get your own tasks done. If you begin to feel frustrated or depressed, you may need to get respite care, so the situation does not become uncomfortable or threatening. Respite is a service where you can take that person to a facility or a professional caregiver can come in to relieve the caregiver of their duties.
So, the first tip is to write down a list of helpers that can be called on if necessary. Make a list of relatives, friends, neighbors, hospice volunters, church members, and paid professionals who can offer assistance. Write down their name, telephone number, e-mail, hours/days available, and what they can assist with.
Another helpful tip is to keep a notebook or binder available. Keep it in an easily accessible place so other people can find it if you are away from the place of care (home, nursing home, etc.). The notebook will be an easy way to keep track of:
- medications - how much to give and at what time they need to be given
- a detailed description of symptoms and when they occur
- hospice staff instructions
- list of phone numbers and other emergency contact information, including the 24-hour emergency hospice number
- medical information
- questions you have for hospice staff as you think of them
Friday, August 8, 2008
A Caregiver's Role in Spirituality
Caregivers of hospice patients play an important role in spirituality during this critical stage of their friend or family member's life. According to Full Circle of Care, they have a dual role: 1) exploring their own concepts or beliefs about death, and 2)helping their loved one accept the reality of their situation.
At times, the dying person wants to make amends for things they have done in their past. This can involve asking forgiveness from family and friends, which may be difficult for those people to hear. Other times it may be just talking about what they did and how they would have changed things. One thing caregivers must do is just listen and be willing to talk about it, which will allow for this type of healing to occur.
When this type of healing does not occur, the physical body is ready to go, but the person may try to hold onto life in order to find a resolution, prolonging the end-of-life process. If a person comes to terms with their life in a peaceful, non-threatening environment, a spiritually peaceful death will occur. This means that the body is ready to go and that person's spirit/emotional part feels resolved and reconciled.
Some people may be in hospice and physically, the person is close to the end, but they continue to live. Some believe that one reason for this is that the person is making sure a caregiver or loved one is going to be alright. The hospice patient may be hanging on just for that loved one. So, it may be a part of the caregiver's role to let them know it is OK to go, which may be hard, but sometimes necessary for a peaceful death to take place.
At times, the dying person wants to make amends for things they have done in their past. This can involve asking forgiveness from family and friends, which may be difficult for those people to hear. Other times it may be just talking about what they did and how they would have changed things. One thing caregivers must do is just listen and be willing to talk about it, which will allow for this type of healing to occur.
When this type of healing does not occur, the physical body is ready to go, but the person may try to hold onto life in order to find a resolution, prolonging the end-of-life process. If a person comes to terms with their life in a peaceful, non-threatening environment, a spiritually peaceful death will occur. This means that the body is ready to go and that person's spirit/emotional part feels resolved and reconciled.
Some people may be in hospice and physically, the person is close to the end, but they continue to live. Some believe that one reason for this is that the person is making sure a caregiver or loved one is going to be alright. The hospice patient may be hanging on just for that loved one. So, it may be a part of the caregiver's role to let them know it is OK to go, which may be hard, but sometimes necessary for a peaceful death to take place.
Thursday, August 7, 2008
What is spirituality?
Hospice was created from a holistic point of view, meaning that the specialize in the physical, emotional, spiritual, and psychological aspects of the patient. This is one main reason for the interdisciplinary team is to be able to assist a person in all areas of their life.
One area that I would like to talk more about is the spiritual aspect of hospice. Many times people tend to lump spirituality and religion together; however they are not the same.
Spirituality refers to the universal human need for love, hope, value, dignity, and relatedness. It is also the search for meaning and transcendence. Religion refers to the formal institutionalized expression of spirituality with a shared belief system. So, a person can be spiritual, but not religious.
Some examples of spirituality can include:
One area that I would like to talk more about is the spiritual aspect of hospice. Many times people tend to lump spirituality and religion together; however they are not the same.
Spirituality refers to the universal human need for love, hope, value, dignity, and relatedness. It is also the search for meaning and transcendence. Religion refers to the formal institutionalized expression of spirituality with a shared belief system. So, a person can be spiritual, but not religious.
Some examples of spirituality can include:
- finding strength or peace in nature
- creativity
- life meaning in family and community
In hospice, spiritual care has a broad context and includes: 1) specific religious needs, such as dietary needs or practices which provide meaning and comfort, and 2)general spiritual issues at the end of life, such as the loss of hope or search for meaning.
All of the interdisciplinary team members are responsible for spiritual care, but the chaplain will play the most important role. Most hospice agencies have chaplains of many faiths that can be called upon when necessary to provide services to the patient and their family.
Tuesday, August 5, 2008
Nick Snow
As I was doing research the other day about pediatric hospice, I ran across an interesting article...
A boy named Nick Snow had been diagnosed with cancer and was known to have "flunked" hospice twice because he improved which receiving hospice services. So, he campaigned with a couple of other children to have palliative care be available to children who are still receiving curative treatments.
In April 2006, Nick Snow died from an intestinal infection. A few months later, in September, California Governor Arnold Schwarzenegger signed Assembly Bill 1745, a.k.a. "The Nick Snow Children's Hospice and Palliative Care Act of 2006.
This bill allows children to receive hospice and palliative care, even though they may be getting treatments to cure their life-limiting illnesses at the same time; however, the services cannot be duplicated. So, if a child is receiving a treatment like chemotherapy or radiation, they will also be able to get hospice care for symptom and pain management.
This bill will help children in California live longer and increase their quality of life during treatments. This legislation will be going before the Federal CMS (Center for Medicare & Medicaid Services) to go into effect as of January 10, 2009.
In April 2006, Nick Snow died from an intestinal infection. A few months later, in September, California Governor Arnold Schwarzenegger signed Assembly Bill 1745, a.k.a. "The Nick Snow Children's Hospice and Palliative Care Act of 2006.
This bill allows children to receive hospice and palliative care, even though they may be getting treatments to cure their life-limiting illnesses at the same time; however, the services cannot be duplicated. So, if a child is receiving a treatment like chemotherapy or radiation, they will also be able to get hospice care for symptom and pain management.
This bill will help children in California live longer and increase their quality of life during treatments. This legislation will be going before the Federal CMS (Center for Medicare & Medicaid Services) to go into effect as of January 10, 2009.
This article also reminded me that it is important to advocate for yourself and others as well. Nick Snow...What an amazing kid! If you want to read more about him, please visit the Nick Snow website.
Helping Children Cope
There are many times in a child's life that they experience loss, death, and grief. In the younger stages of life, this can range from the loss of a best friend moving away, to the death of their pet fish, or in more tragic cases, the death of a family member.
Other national types of losses that can affect children might include 9/11 and the war in Iraq. I remember being in 5th grade when the Oklahoma City bombing occurred. My teacher at the time was actually from that area, so it probably hit our classroom a little closer than others. As a sign of our love and thoughts, we drew pictures and sent them to another elementary school in the OKC area. About 4 years ago, I was able to go to the site and see the memorial that had been established for those that lost their lives. It brought back a lot of memories even though I was only 10 at the time. Loss and death affect everyone.
According to the National Association of School Psychologists, when talking to children about death, it is important to keep it at their developmental level, be respectful of their cultural norms, and be sensitive to the capacity to understand the situation. Many times for children in the younger grades (K-2nd gr.), their views of the situation will be based on adult reactions.
When grieving the loss of a significant person in their life, a children's reactions may include:
- emotional shock: lack of feelings, which helps them detach from the pain
- regressive/immature behaviors: needing to be rocked or held, difficulty completing tasks at their level, or wanting to sleep in their parent's bed.
- explosive behaviors: acting out internal feelings of anger, terror, frustration, and helplessness
- asking the same questions over and over: the information is hard to believe or accept, not because they don't understand it
There are some things that you can do to help children cope with loss:
Other national types of losses that can affect children might include 9/11 and the war in Iraq. I remember being in 5th grade when the Oklahoma City bombing occurred. My teacher at the time was actually from that area, so it probably hit our classroom a little closer than others. As a sign of our love and thoughts, we drew pictures and sent them to another elementary school in the OKC area. About 4 years ago, I was able to go to the site and see the memorial that had been established for those that lost their lives. It brought back a lot of memories even though I was only 10 at the time. Loss and death affect everyone.
According to the National Association of School Psychologists, when talking to children about death, it is important to keep it at their developmental level, be respectful of their cultural norms, and be sensitive to the capacity to understand the situation. Many times for children in the younger grades (K-2nd gr.), their views of the situation will be based on adult reactions.
When grieving the loss of a significant person in their life, a children's reactions may include:
- emotional shock: lack of feelings, which helps them detach from the pain
- regressive/immature behaviors: needing to be rocked or held, difficulty completing tasks at their level, or wanting to sleep in their parent's bed.
- explosive behaviors: acting out internal feelings of anger, terror, frustration, and helplessness
- asking the same questions over and over: the information is hard to believe or accept, not because they don't understand it
There are some things that you can do to help children cope with loss:
- Provide children the opportunity to tell their story, but most importantly listen to them.
- Allow enough time for them to grieve. Pressuring them to resume to normalcy may prompt negative reactions or additional problems.
- Tell the truth because children will pick up on the fact that you are hiding the truth and will question your trust in them.
- Encourage them to ask questions and death.
- Support them emotionally.
Sunday, August 3, 2008
Perinatal Hospice
Along the lines of pediatric hospice, is perinatal hospice. With the many recent advances in technology, doctors are able to conduct prenatal screenings that are able to detect hundreds of conditions. Parents are then faced with difficult decisions about their unborn children.
Perinatal hospice offers support to parents and their families who are in a situation, which will most likely result in the death of the infant. The need for hospice comes when the parents want to continue the pregnancy and want to meet their child before death occurs. Care begins at the start of diagnosis. Perinatal hospice may include birth planning and health care decisions after the baby is born. Traditional hospice care continues after the birth, even if it is no more than a few minutes or hours, and can take place in the family's home.
One difference that I saw while reading was that bereavement support at one hospice in San Diego was offered for a minimum of 18 months. In many cases, bereavement is offered for only 13 months.
Perinatal hospice offers support to parents and their families who are in a situation, which will most likely result in the death of the infant. The need for hospice comes when the parents want to continue the pregnancy and want to meet their child before death occurs. Care begins at the start of diagnosis. Perinatal hospice may include birth planning and health care decisions after the baby is born. Traditional hospice care continues after the birth, even if it is no more than a few minutes or hours, and can take place in the family's home.
One difference that I saw while reading was that bereavement support at one hospice in San Diego was offered for a minimum of 18 months. In many cases, bereavement is offered for only 13 months.
Children's Hospice
Many people have misconceptions that hospice is only for older adults; however children at the other end of life's spectrum may also have needs to require hospice care as well. There are some similarities to adult hospice, but many differences also.
Many of the goals and values are the same. The hospice interdisciplinary teams have the interest of the patient at heart and the goal is still pain management. Although, in pediatric hospice, children are allowed to receive other treatments in addition to pain management. This happened as a result of a bill passed in 2006 in California.
When researching pediatric hospice, I saw variations in the amount of months that children need to be eligible for hospice. Some had ranges that included 12 months or less, compared to the six months for adults.
Other differences include the need for staff members who have skills and a large knowledge base with children. The development needs and issues are definitely different than a predominantly elderly population. Depending on the development stages children are going through, they have different views about death.
According to Children's Hospice International, patient issues include that they are not legally competent, leaving decision-making up to their parents. The child also has not achieved a "full and complete life." They also lack the ability to describe their needs and feelings, which can cause complications to symptom relief.
Family may also have difficulty with siblings. Grandparents may also feel helpless with their children and their grandchildren.
Pediatric hospice is definitely an area that needs to be expanded on and more people need to be aware of all populations that hospice can include.
Many of the goals and values are the same. The hospice interdisciplinary teams have the interest of the patient at heart and the goal is still pain management. Although, in pediatric hospice, children are allowed to receive other treatments in addition to pain management. This happened as a result of a bill passed in 2006 in California.
When researching pediatric hospice, I saw variations in the amount of months that children need to be eligible for hospice. Some had ranges that included 12 months or less, compared to the six months for adults.
Other differences include the need for staff members who have skills and a large knowledge base with children. The development needs and issues are definitely different than a predominantly elderly population. Depending on the development stages children are going through, they have different views about death.
According to Children's Hospice International, patient issues include that they are not legally competent, leaving decision-making up to their parents. The child also has not achieved a "full and complete life." They also lack the ability to describe their needs and feelings, which can cause complications to symptom relief.
Family may also have difficulty with siblings. Grandparents may also feel helpless with their children and their grandchildren.
Pediatric hospice is definitely an area that needs to be expanded on and more people need to be aware of all populations that hospice can include.
Sunday, July 27, 2008
Self-care for Caregivers
Many caregivers can become physically and emotionally drained if they do not take care of themselves, making it harder to care for someone else. So, to take care of yourself, you can follow these ideas:
- Get rest
- Eat a healthy, balanced diet
- Take your own medications
- Set time aside for yourself each day (examples: take a walk, read, relax, etc.)
- Try to balance caregiving with your social and work life
- Express your feelings
- Do not isolate yourself and get out of the house when you can
- Participate in support groups
- Schedule respite care
- Be patient and compassionate
Monday, July 21, 2008
Role of Hospice Social Workers
Social workers play an important role in hospice care. They are just one part that make up the interdisciplinary team, which usually consists of doctors, nurses, and clergy. Social workers assist clients in finding resources for individuals.
During hospice care, social workers may help families alleviate stress with things such as with medical bills or finding respite care. If requested by the family, hospice social workers can also provide information on funeral planning.
Social workers can also provide counseling to the patient and their families with their emotions or other pending issues that may arise. In some cases, family conflicts can occur regarding a patient's care. In those instances, the social worker can provide a neutral point of view, who can listen and help the family sort out their problems.
When hospice services are no longer needed, grief and bereavement services are offered to the family for generally 13 months. Support groups are often lead by social workers as well.
During hospice care, social workers may help families alleviate stress with things such as with medical bills or finding respite care. If requested by the family, hospice social workers can also provide information on funeral planning.
Social workers can also provide counseling to the patient and their families with their emotions or other pending issues that may arise. In some cases, family conflicts can occur regarding a patient's care. In those instances, the social worker can provide a neutral point of view, who can listen and help the family sort out their problems.
When hospice services are no longer needed, grief and bereavement services are offered to the family for generally 13 months. Support groups are often lead by social workers as well.
Sunday, July 13, 2008
Journaling...More ideas for writing
Caregivers: Jounaling can be a great way to look inward at how your experiences and struggles are affecting you. It also allows the opportunity for spiritual exploration and questioning.
- Find a picture of your loved one. Journal about the picture. What your loved one is doing, what you are doing, why the picture is important to your life together, the memories it holds for you, where God is present in your life together...
- Journal about any unresolved issues you have about your loved one. Write a conversation that never took place but that you wish you had had the opportunity to share with your loved one (expressions of love, the need for forgiveness/reconciliation, unresolved anger...)
- How is God present in your vigil? Where is God? Write about your experiences of God through your loved one, other people, visions, feelings... Write about your feelings towards God (peace, companionship, anger, strength...) Remember God is big enough to handle your feelings and their intensity.
- On your journey through your loved one's illness, what words did someone speak that you found meaningful? What words did someone offer that you found offensive/unhelpful? Journal about these words and why you feel the way you do about them.
- What memories about your loved one do you want preserved for your children? Write about the legacy your loved one leaves for the family. Write about your loved one's personal faith.
- How will your loved one keep living through you? Write about these traits (good and bad) and how you want to develop these parts of yourself. How has your loved one's faith experience affected your own spiritual journey?
- On sleepless nights, use your journal to uncover feelings, let go of anxiety, sort out confusion, understand self, release tensions and cope with stress.
- Draw a picture or make a collage of images that express your thoughts and ideas.
- Jot down isolated feelings. Explore creative options for dealing with these feelings or devise rituals for releasing them.
- Write the lyrics to a song that reflect your vigil experience.
- Write the prayers of your heart in your journal and save them to read when prayer seems difficult.
***Ideas taken from Hospice Net
Do Not Stand at My Grave and Weep
Do not stand at my grave and weep,
I am not there. I do not sleep.
I am a thousand winds that blow,
I am the snow on the mountain's rim,
I am the laughter in children's eyes,
I am the sand at the water's edge,
I am the sunlight on ripened grain,
I am the gentle Autumn rain,
When you awaken in the morning's hush,
I am the swift uplifting rush of quiet birds in circled flight,
I am the star that shines at night,
Do not stand at my grave and cry,
I am not there, I did not die.
- Mary Elizabeth Frye
I am not there. I do not sleep.
I am a thousand winds that blow,
I am the snow on the mountain's rim,
I am the laughter in children's eyes,
I am the sand at the water's edge,
I am the sunlight on ripened grain,
I am the gentle Autumn rain,
When you awaken in the morning's hush,
I am the swift uplifting rush of quiet birds in circled flight,
I am the star that shines at night,
Do not stand at my grave and cry,
I am not there, I did not die.
- Mary Elizabeth Frye
A Comforting Analogy
Gone From My Sight
I am standing upon the seashore. A ship at my side spreads her white sails to the ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says: “There, she is gone!”
“Gone where?”
Gone from my sight. That is all.
Her diminished size is in me, not in her. And just at the moment when someone at my side says: “There, she is gone!” there are other eyes watching her coming, and other voices ready to take up the glad shout:
“Here she comes!”
And that is dying.
-Henry Van Dyke
Sunday, July 6, 2008
Glossary
Advance Medical Directives - Advance directives are used to give other people, including health care providers, information about your wishes for medical care. Advance directives are important in case there is ever a time when you are not physically or mentally able to speak for yourself and make your wishes known. The most common types of advance directives are the living will and the durable power of attorney for health care
Bereavement - The act of grieving someone's death
Caregiver - Any person who provides care for the physical and emotional needs of an individual; can be formal (a professional, social worker, or volunteer) or informal (family member or friend)
Do-Not-Resuscitate (DNR) Orders - Instructions written by a doctor telling other healthcare providers not to try to restart a patient's heart, using cardiopulmonary resuscitation (CPR) or other related treatments, if his/her heart stops beating. Usually, DNR orders are written after a discussion between a doctor and the patient and/or family members. DNR orders are written for people who are very unlikely to have a successful result from CPR -- those who are terminally ill or those who are elderly and frail
Durable Power of Attorney for Health Care (DPOAHC) - A legal document that specifies one or more individuals (called a health care proxy) you would like to make medical decisions for you if you are unable to do so yourself
End-of-Life Care - Doctors and caregivers provide care to patients approaching the end of life that is focused on comfort, respect for decisions, support for the family, and treatments to help psychological and spiritual concerns
Grief - people's feelings and emotions in response to death, which may or may not include sadness, anger, frustration, guilt, longing, helplessness, hopelessness, and powerlessness
Anticipatory grief - feelings that occur before or in advance of an expected loss
Interdisciplinary team - a team of professional caregivers who work together to develop and implement a plan of care for the individual in hospice; May include doctors, nurses, medical directors, social workers, and a chaplain
Dyspnea - Difficulty in breathing
Fatigue - A feeling of becoming tired easily, being unable to complete usual activity, feeling weak, and difficulty concentrating
Acute Pain - Pain that has a known cause and occurs for a limited time. Acute pain usually responds to treatment with analgesic medications and treatment of the cause of the pain
Chronic Pain - Pain that occurs for more than one month after healing of an injury, that occurs repeatedly over months, or is due to a lesion that is not expected to heal
Delirium - A disturbance of the brain function that causes confusion and changes in alertness, attention, thinking and reasoning, memory, emotions, sleeping patterns and coordination. These symptoms may start suddenly, are due to some type of medical problem, and they may get worse or better multiple times
Bereavement - The act of grieving someone's death
Caregiver - Any person who provides care for the physical and emotional needs of an individual; can be formal (a professional, social worker, or volunteer) or informal (family member or friend)
Do-Not-Resuscitate (DNR) Orders - Instructions written by a doctor telling other healthcare providers not to try to restart a patient's heart, using cardiopulmonary resuscitation (CPR) or other related treatments, if his/her heart stops beating. Usually, DNR orders are written after a discussion between a doctor and the patient and/or family members. DNR orders are written for people who are very unlikely to have a successful result from CPR -- those who are terminally ill or those who are elderly and frail
Durable Power of Attorney for Health Care (DPOAHC) - A legal document that specifies one or more individuals (called a health care proxy) you would like to make medical decisions for you if you are unable to do so yourself
End-of-Life Care - Doctors and caregivers provide care to patients approaching the end of life that is focused on comfort, respect for decisions, support for the family, and treatments to help psychological and spiritual concerns
Grief - people's feelings and emotions in response to death, which may or may not include sadness, anger, frustration, guilt, longing, helplessness, hopelessness, and powerlessness
Anticipatory grief - feelings that occur before or in advance of an expected loss
Interdisciplinary team - a team of professional caregivers who work together to develop and implement a plan of care for the individual in hospice; May include doctors, nurses, medical directors, social workers, and a chaplain
Dyspnea - Difficulty in breathing
Fatigue - A feeling of becoming tired easily, being unable to complete usual activity, feeling weak, and difficulty concentrating
Acute Pain - Pain that has a known cause and occurs for a limited time. Acute pain usually responds to treatment with analgesic medications and treatment of the cause of the pain
Chronic Pain - Pain that occurs for more than one month after healing of an injury, that occurs repeatedly over months, or is due to a lesion that is not expected to heal
Delirium - A disturbance of the brain function that causes confusion and changes in alertness, attention, thinking and reasoning, memory, emotions, sleeping patterns and coordination. These symptoms may start suddenly, are due to some type of medical problem, and they may get worse or better multiple times
Sunday, June 15, 2008
Buchwald Raised Hospice Awareness
By JANE E. BRODY in The San Diego Union-Tribune
January 30, 2007
As the self-described “man who would not die,” the humor columnist Art Buchwald was a strange bedfellow with the hospice movement. But in the months between the end of his extended hospice stay and his death from kidney failure Jan. 17 at age 81, Buchwald was a living testimonial to the benefits of hospice care.
What he hoped to do, he wrote in his recently published book, “Too Soon to Say Goodbye” (Random House, 2006), was make “hospice” a household word. “Unless they've had some experience with it, the hospice is still a mystery to most people,” he wrote. “Because hospice deals with death, people tend not to talk about it.”
Early last year, Buchwald wrote, after his kidneys failed, after he lost a leg and after doctors told him he would have to be on dialysis for the rest of his life, he decided “enough already.” So he moved from a critical care bed to a comfortable room in a lovely hospice in Washington, D.C., to await his death, which his doctor expected would come in a few weeks.
But Buchwald did not die. Instead, his kidneys rebounded while he entertained a steady stream of visits from the rich and famous and ordinary in his hospice living room. Finally, after five months of having “a swell time – the best time of my life,” Buchwald checked himself out of hospice to resume an ordinary life of a famous old funny man.
“The hospice gives a person the opportunity to die with dignity,” he wrote. “It provides care, help, and as much comfort as possible.”
And not just for the person who is dying. As Buchwald described his experience, “When the patient enters the hospice, an entire team sets to work to meet the family's needs – a doctor, a team of nurses, a case manager, a social worker, a chaplain, a nursing assistant, a bereavement coordinator, and of course, the volunteers,” who give nurses more time to spend with patients by answering phones, screening calls and running errands.
Hospice services, in institutional settings or at home, benefit only about one person in three who dies in this country. “There are still more than 1 million Americans who die each year without receiving hospice or hospice-type services that would have benefited them and their families,” according to a report, “Access to Hospice Care,” produced in 2003 by the Hastings Center.
And for most who do get hospice care, the benefit is short-lived, with the average patient receiving care for less than three weeks.
With time in hospice so short, staff members often lack the opportunity to provide optimum care for a dying patient's physical and emotional needs. It can take days or weeks to determine the best way to control a patient's pain, to help a patient tie up life's loose ends and to fulfill a patient's spiritual and emotional needs.
There are several reasons that more patients do not go into hospice care earlier. One is the Medicare-dictated requirement that patients entering hospice forgo life-prolonging treatment for their disease and waive coverage that would pay for such treatment. Some patients or their families refuse to stop therapy for a fatal disease, even when it is obviously not helping.
Only comfort care is covered through the hospice benefit, and patients sometimes have to fight for therapies to control distressing symptoms, like blood or platelet transfusions, that may coincidentally prolong their lives.
Medicare also requires that the doctor referring someone for hospice care must certify that the patient is expected to die within six months. Doctors – as was the case with Buchwald – are notoriously poor at predicting life expectancy. And for most life-threatening chronic diseases – congestive heart failure, kidney failure – it is impossible to predict longevity with the precision that Medicare requires.
Some doctors fear allegations of fraud if patients they refer to hospice do not die within six months, and so are afraid to make an early referral.
Finally, there are simply not enough hospice centers and services available to meet the needs of dying patients. Most hospices operate on a shoestring, supported by donations as well as reimbursements from Medicare and private insurers. Insurers rarely cover the full costs of operating a well-run hospice service. Yet good hospice care costs far less than treatment of dying patients in hospital intensive care units, which insurance does cover.
The philosophy of hospice is to neither hasten nor postpone death. As Dr. Matt Kestenbaum, the medical director of Buchwald's hospice, put it: “We're not here to pull the plug. We let nature take its course, and we give patients all the things they need to be comfortable.”
To watch a video about Bchwald's experience in hospice, view the CNN video (6 minutes).
Hospice / Palliative Care: Lack of Awareness Continues to Challenge
By Tracy Hulett
As seen in Chicago Hospital News
Published November 2007
In an article published by the National Association of Social Workers, oncology social workers reported an overwhelmingly positive view of hospice philosophy and care. Yet, they referred fewer than 50% of their patients to hospice care. The chief reason cited for the low referral rate was resistance from patients’ families to discontinuing active treatment. One of the great challenges in providing hospice care is educating those who can most benefit from it - at a time when they are not interested in listening. One expert in senior services believes the time for education comes long before the crisis.
Linda Dolan, Director of Leisure Services at the Wheaton Park District, promotes early education for patrons and ’ their families. "We offer workshops that address many of the aspects of aging - from legal and insurance issues to health care issues like hospice. The workshops answer questions people don’t like to ask. As the population ages, we’re seeing a lot more interest from the children of our patrons in leaming about hospice. Most of them have a general idea, but are usually unaware of the resources available not just to the patient, but to family members as well."
When families have a lack of knowledge about hospice it results in shorter stays in hospice programs, which keeps patients and their families from receiving the full benefit of hospice team services. In 2004, according to the National Hospice and Palliative Care Organization, the average amount of time a patient was enrolled in hospice in the United States was 57 days. 35 percent of the patients died within one week of admission.
"I wish Dad had spent more time in hospice," recounts Nancy, whose father passed away in May. "He started hospice and eight days later he was gone. The nurses, chaplain and volunteers were wonderful, but we just didn’t start soon enough. It was almost as much of a shock learning what we missed out on as it was losing Dad so quickly. But how do you know something like that?"
Susan Levitt, Executive Director of CNS Home Health & Hospice in Carol Stream, says, "A number of our families have indicated they didn’t know enough about hospice before they were faced with a critical situation.
Now patients have access to palliative care programs as well. Its such a valuable option, but again, its just not something people know much about. That’s why we’ve begun presenting sessions on aging-related issues. We never want a patient or a family to be deprived of what palliative and hospice care have to offer simply because they aren’t aware of it."
"An employee is the session’s inspiration. As the only sibling local to her parents, she managed matters during her father’s extended illness and after his death. She said there was so much she didn’t know -~ then heard the same thing from friends with aging parents. She suggested we put something together as a public service."
The program, "Aging Parents: What You Need to Know," provides an organizational checklist for the adult children to discuss with parents including:
• Do they have an attorney?
• Do they have an accountant?
• What insurance do they have and where are the policies kept?
• Where do they keep track of medical information, physician phone numbers and prescriptions?
The program also covers matters unfamiliar to many, but vital when dealing with a serious illness. What is palliative care? If Mom needs it, how is it paid for? What are advance directives? What is a DNR and when is it implemented?
"We offer other programs, like fall prevention and safety in the home, managing grief, and cardiac health," says Levitt. "But we feel the Aging program will have a broad appeal because it answers so many questions - kind of an Aging 101."
As seen in Chicago Hospital News
Published November 2007
In an article published by the National Association of Social Workers, oncology social workers reported an overwhelmingly positive view of hospice philosophy and care. Yet, they referred fewer than 50% of their patients to hospice care. The chief reason cited for the low referral rate was resistance from patients’ families to discontinuing active treatment. One of the great challenges in providing hospice care is educating those who can most benefit from it - at a time when they are not interested in listening. One expert in senior services believes the time for education comes long before the crisis.
Linda Dolan, Director of Leisure Services at the Wheaton Park District, promotes early education for patrons and ’ their families. "We offer workshops that address many of the aspects of aging - from legal and insurance issues to health care issues like hospice. The workshops answer questions people don’t like to ask. As the population ages, we’re seeing a lot more interest from the children of our patrons in leaming about hospice. Most of them have a general idea, but are usually unaware of the resources available not just to the patient, but to family members as well."
When families have a lack of knowledge about hospice it results in shorter stays in hospice programs, which keeps patients and their families from receiving the full benefit of hospice team services. In 2004, according to the National Hospice and Palliative Care Organization, the average amount of time a patient was enrolled in hospice in the United States was 57 days. 35 percent of the patients died within one week of admission.
"I wish Dad had spent more time in hospice," recounts Nancy, whose father passed away in May. "He started hospice and eight days later he was gone. The nurses, chaplain and volunteers were wonderful, but we just didn’t start soon enough. It was almost as much of a shock learning what we missed out on as it was losing Dad so quickly. But how do you know something like that?"
Susan Levitt, Executive Director of CNS Home Health & Hospice in Carol Stream, says, "A number of our families have indicated they didn’t know enough about hospice before they were faced with a critical situation.
Now patients have access to palliative care programs as well. Its such a valuable option, but again, its just not something people know much about. That’s why we’ve begun presenting sessions on aging-related issues. We never want a patient or a family to be deprived of what palliative and hospice care have to offer simply because they aren’t aware of it."
"An employee is the session’s inspiration. As the only sibling local to her parents, she managed matters during her father’s extended illness and after his death. She said there was so much she didn’t know -~ then heard the same thing from friends with aging parents. She suggested we put something together as a public service."
The program, "Aging Parents: What You Need to Know," provides an organizational checklist for the adult children to discuss with parents including:
• Do they have an attorney?
• Do they have an accountant?
• What insurance do they have and where are the policies kept?
• Where do they keep track of medical information, physician phone numbers and prescriptions?
The program also covers matters unfamiliar to many, but vital when dealing with a serious illness. What is palliative care? If Mom needs it, how is it paid for? What are advance directives? What is a DNR and when is it implemented?
"We offer other programs, like fall prevention and safety in the home, managing grief, and cardiac health," says Levitt. "But we feel the Aging program will have a broad appeal because it answers so many questions - kind of an Aging 101."
Hospice Facts and Statistics
Koyaanisqatsi - a Hopi Indian word that means "life in turmoil" or "life out of balance".
Powaqqatsi – a Hopi Indian word that means “life in transition" or “life in transformation”.
I can't think of two more appropriate words that define what the decision to enter hospice care is like for patients and their families.
The National Hospice and Palliative Care Organization(NHPCO) estimates, "that 1.3 million patients received services from hospice in 2006. The indicates a 162% increase from the last 10 years. With the length of service remaining at 59 days."
Of the 4500 hospice programs, 19.6 % of them operate an inpatient facility as well as providing in home care. Of that 19.6.% that provide inpatient care, 87.1% are either freestanding or located within a hospital.
For some people they hear the word hospice and think of it as a place to give up and die. But a study that was published in the Journal of Pain and Symptom Management found evidence to show that hospice care may prolong the life of some terminally ill patients. With an average survival of 29 days longer for hospice patients than for non-hospice patients. And the largest difference in survival being seen in patients with congestive heart failure.
As the population continues to age hospices will see a growth in the number of patients 65 and older. Currently 4 out of 5 patients in hospice are 65 years and older. With one third of all hospice patients being 85 years or older.
The main source of payment for hospice care is The Medicare Hospice Benefit. To be eligible one must be entitled to Medicare Part A, and be certified by their medical doctor and the hospice medical director as having a terminal condition with a prognosis of six months or less to live if the illness were allowed to run its natural course. The way it works is there are two initial 90-day benefit periods followed by an unlimited number of 60-day periods. Please note that each period requires physician re-certification.
While bringing quality care to patients with life-limiting illnesses and their families is the top priority for hospices and their staff, a study conducted by Duke University demonstrated that hospice services save money for Medicare, by an average of $2309.00 per hospice patient. It also showed that Medicare costs could be reduced further for 7 out of 10 hospice programs if the hospice had been used for longer period of time.
In addition to the excellent quality of care that patients receive in hospice, there is also a commitment to provide bereavement services to the family members of hospice patients as well as the community at large. These services are available to the family for up to one year after the death of their family member. Typically, families receive seven contacts over the year, including phone calls, visits, and mailings.
Volunteers in hospices devote a total of 40.7 hours overr the course of the year. 58.9% of hospice volunteers work directly with the hospice patient and make an average of 18.5 visits to hospice patients.
Powaqqatsi – a Hopi Indian word that means “life in transition" or “life in transformation”.
I can't think of two more appropriate words that define what the decision to enter hospice care is like for patients and their families.
The National Hospice and Palliative Care Organization(NHPCO) estimates, "that 1.3 million patients received services from hospice in 2006. The indicates a 162% increase from the last 10 years. With the length of service remaining at 59 days."
Of the 4500 hospice programs, 19.6 % of them operate an inpatient facility as well as providing in home care. Of that 19.6.% that provide inpatient care, 87.1% are either freestanding or located within a hospital.
For some people they hear the word hospice and think of it as a place to give up and die. But a study that was published in the Journal of Pain and Symptom Management found evidence to show that hospice care may prolong the life of some terminally ill patients. With an average survival of 29 days longer for hospice patients than for non-hospice patients. And the largest difference in survival being seen in patients with congestive heart failure.
As the population continues to age hospices will see a growth in the number of patients 65 and older. Currently 4 out of 5 patients in hospice are 65 years and older. With one third of all hospice patients being 85 years or older.
The main source of payment for hospice care is The Medicare Hospice Benefit. To be eligible one must be entitled to Medicare Part A, and be certified by their medical doctor and the hospice medical director as having a terminal condition with a prognosis of six months or less to live if the illness were allowed to run its natural course. The way it works is there are two initial 90-day benefit periods followed by an unlimited number of 60-day periods. Please note that each period requires physician re-certification.
While bringing quality care to patients with life-limiting illnesses and their families is the top priority for hospices and their staff, a study conducted by Duke University demonstrated that hospice services save money for Medicare, by an average of $2309.00 per hospice patient. It also showed that Medicare costs could be reduced further for 7 out of 10 hospice programs if the hospice had been used for longer period of time.
In addition to the excellent quality of care that patients receive in hospice, there is also a commitment to provide bereavement services to the family members of hospice patients as well as the community at large. These services are available to the family for up to one year after the death of their family member. Typically, families receive seven contacts over the year, including phone calls, visits, and mailings.
Volunteers in hospices devote a total of 40.7 hours overr the course of the year. 58.9% of hospice volunteers work directly with the hospice patient and make an average of 18.5 visits to hospice patients.
Houston area hospice providers
Below are names and contacts for Houston area hospices found in the 2008-2009 Senior Guidance Directory:
Astrocare Home Health Care: (281)931-5500
Christus HomeCare: (713)520-8115
Houston Hospice: 1(800)630-7894
Lighthouse Hospice: 1(888)290-7727
Memorial Hermann Hospice: (281)784-7520
Odyssey HealthCare of Houston: (713)592-5600
Silverado Hospice: (281)565-2900
Listed below are some additional hospices in Houston:
Evercare Hospice and Palliative Care: (713)219-6490
Amed Community Hospice: 1(888)592-1262
American Hospice: (713)946-9006
East Harris County Hospice Service Inc: (713)450-4500
Hospice Care Team: (713)453-8862
Vitas Innovative Hospice Care: 1(800)628-8081
Astrocare Home Health Care: (281)931-5500
Christus HomeCare: (713)520-8115
Houston Hospice: 1(800)630-7894
Lighthouse Hospice: 1(888)290-7727
Memorial Hermann Hospice: (281)784-7520
Odyssey HealthCare of Houston: (713)592-5600
Silverado Hospice: (281)565-2900
Listed below are some additional hospices in Houston:
Evercare Hospice and Palliative Care: (713)219-6490
Amed Community Hospice: 1(888)592-1262
American Hospice: (713)946-9006
East Harris County Hospice Service Inc: (713)450-4500
Hospice Care Team: (713)453-8862
Vitas Innovative Hospice Care: 1(800)628-8081
Friday, June 13, 2008
Dying Person's Bill of Rights
I have the right to be treated as a living human until I die.
I have the right to maintain a sense of hopefulness, however changing its focus may be.
I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.
I have the right to express my feelings and emotions about my approaching death in my own way.
I have the right to participate in decisions concerning my care.
I have the right to expect continuing medical and nursing attention even though “cure” goals must be changed to “comfort” goals.
I have the right to not die alone.
I have the right to be free of pain.
I have the right to have my questions answered honestly.
I have the right to retain my individuality and not be judged for my decisions, which may be contrary to the belief of others.
I have the right to expect that the sanctity of the human body will be respected after death.
I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.
*Created at a workshop, "The Terminally Ill Patient and the Helping Person," in Lansing Michigan sponsored by the South Western Michigan Inservice Education Council and conducted by Amelia Barbus (1975), Associate Professor of Nursing, Wayne State University.
I have the right to maintain a sense of hopefulness, however changing its focus may be.
I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.
I have the right to express my feelings and emotions about my approaching death in my own way.
I have the right to participate in decisions concerning my care.
I have the right to expect continuing medical and nursing attention even though “cure” goals must be changed to “comfort” goals.
I have the right to not die alone.
I have the right to be free of pain.
I have the right to have my questions answered honestly.
I have the right to retain my individuality and not be judged for my decisions, which may be contrary to the belief of others.
I have the right to expect that the sanctity of the human body will be respected after death.
I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.
*Created at a workshop, "The Terminally Ill Patient and the Helping Person," in Lansing Michigan sponsored by the South Western Michigan Inservice Education Council and conducted by Amelia Barbus (1975), Associate Professor of Nursing, Wayne State University.
Ideas for writing
You may find it helpful to “sort out” your thoughts about your loved one by writing a letter to the person who died. Express your thoughts and feelings about:
A special memory that I have about you…
What I miss the most about you and our relationship…
What I wish I had said or had not said…
What I’d like to ask you…
What I wish we’d done or had not done…
What I have had the hardest time dealing with…
Ways in which you will continue to live on in me…
Special ways I have for keeping my memories of you alive…
Choose one or several ideas that are important to you or start at the top of the list and work your way down. These topics may help you come up with ideas specific to your situation and relationship.
A special memory that I have about you…
What I miss the most about you and our relationship…
What I wish I had said or had not said…
What I’d like to ask you…
What I wish we’d done or had not done…
What I have had the hardest time dealing with…
Ways in which you will continue to live on in me…
Special ways I have for keeping my memories of you alive…
Choose one or several ideas that are important to you or start at the top of the list and work your way down. These topics may help you come up with ideas specific to your situation and relationship.
FYI
According to the American Hospice Foundation, 90% of people die from long-term illness and only 10% from sudden deaths.
Thursday, June 12, 2008
Myths and Realities (A.K.A. Demythifying Hospice)
Myth: Hospice is a place.
Reality: Hospice care usually takes place in the comfort of an individual's home, but can be provided in any environment in which a person lives, including a nursing home, assisted living facility, or residential care facility.
Myth: I am afraid I will lose my Social Security benefits if I enter hospice.
Reality: No. Medicare pays for the hospice costs and Social Security payments are not affected.
Reality: Hospice care usually takes place in the comfort of an individual's home, but can be provided in any environment in which a person lives, including a nursing home, assisted living facility, or residential care facility.
Myth: When should patients and families consider hospice?
Reality: After a diagnosis of a life-limiting illness, patients and their families should consider all of their options. A person does not have to be bed-bound or critically ill to be admitted to hospice.
Myth: Hospice means that the patient will soon die.
Reality: Receiving hospice care does not mean giving up hope or that death is imminent. The earlier an individual receives hospice care, the more opportunity there is to stabilize a patient's medical condition and address other needs.
Myth: Hospice is only for cancer patients.
Reality: A large number of hospice patients have congestive heart failure, Alzheimer's disease or dementia, chronic lung disease, or other conditions.
Myth: Hospice provides 24-hour care.
Reality: The hospice team (which includes nurses, social workers, home health aides, volunteers, chaplains, and bereavement counselors) visits patients intermittently, and areavailable 24 hours a day/7 days a week for support and care. Some hospices are able to provide "continuous care," but hospices must have a program in place for this to happen and hospice patients must meet certain criteria.
Myth: All hospice programs are the same.
Reality: All licensed hospice programs must provide certain services, but the range of support services and programs may differ. In addition, hospice programs and operating styles may vary from state to state depending on state laws and regulations. Like other medical care providers, business models differ. Some programs are not-for-profit and some hospices are for-profit.
Myth: Hospice is just for the patient.
Reality: Hospice focuses on comfort, dignity, and emotional support. The quality of life for the patient, and also family members and others who are caregivers, is the highest priority.
Myth: Hospice means giving up hope.
Reality: When faced with a terminal illness, many patients and family members tend to dwell on the imminent loss of life rather than on making the most of the life that remains. Hospice helps patients reclaim the spirit of life. It helps them understand that even though death can lead to sadness, anger, and pain, it can also lead to opportunities for reminiscence, laughter, reunion, and hope.A patient needs Medicare or Medicaid to afford hospice services.
Reality: Receiving hospice care does not mean giving up hope or that death is imminent. The earlier an individual receives hospice care, the more opportunity there is to stabilize a patient's medical condition and address other needs.
Myth: Hospice is only for cancer patients.
Reality: A large number of hospice patients have congestive heart failure, Alzheimer's disease or dementia, chronic lung disease, or other conditions.
Myth: Hospice provides 24-hour care.
Reality: The hospice team (which includes nurses, social workers, home health aides, volunteers, chaplains, and bereavement counselors) visits patients intermittently, and areavailable 24 hours a day/7 days a week for support and care. Some hospices are able to provide "continuous care," but hospices must have a program in place for this to happen and hospice patients must meet certain criteria.
Myth: All hospice programs are the same.
Reality: All licensed hospice programs must provide certain services, but the range of support services and programs may differ. In addition, hospice programs and operating styles may vary from state to state depending on state laws and regulations. Like other medical care providers, business models differ. Some programs are not-for-profit and some hospices are for-profit.
Myth: Hospice is just for the patient.
Reality: Hospice focuses on comfort, dignity, and emotional support. The quality of life for the patient, and also family members and others who are caregivers, is the highest priority.
Myth: Hospice means giving up hope.
Reality: When faced with a terminal illness, many patients and family members tend to dwell on the imminent loss of life rather than on making the most of the life that remains. Hospice helps patients reclaim the spirit of life. It helps them understand that even though death can lead to sadness, anger, and pain, it can also lead to opportunities for reminiscence, laughter, reunion, and hope.A patient needs Medicare or Medicaid to afford hospice services.
Myth: Hospice care teams only includes doctors and nurses.
Reality: A hospice care team consists of: doctors; nurses; home health aides; spiritual counselors; social workers; volunteers; and bereavement counselors
Myth: After six months, patients are no longer eligible to receive hospice care through Medicare and other insurances.
Reality: According to the Medicare hospice program, services may be provided to terminally ill Medicare beneficiaries with a life expectancy of six months or less. However, if the patient lives beyond the initial six months, he or she can continue receiving hospice care as long as the attending physician recertifies that the patient is terminally ill. Medicare, Medicaid, and many other private and commercial insurances will continue to cover hospice services as long as the patient meets hospice criteria of having a terminal prognosis and is recertified with a limited life expectancy of six months or less.
Myth: Once a patient elects hospice, he or she can no longer receive care from the primary care physician.
Reality: Hospice reinforces the patient-primary physician relationship by advocating either office or home visits, according to the physician preference. Hospices work closely with the primary physician and consider the continuation of the patient-physician relationship to be of the highest priority.
Myth: Once a patient elects hospice care, he or she cannot return to traditional medical treatment.
Reality: Patients always have the right to reinstate traditional care at any time, for any reason. If a patient's condition improves or the disease goes into remission, he or she can be discharged from a hospice and return to aggressive, curative measures, if so desired. If a discharged patient wants to return to hospice care, Medicare, Medicaid, and most private insurance companies and HMOs will allow readmission.
Myth: A patient needs Medicare or Medicaid to afford hospice services.
Reality: Although insurance coverage for hospice is available through Medicare and in 44 states and the District of Columbia under Medicaid, most private insurance plans, HMOs, and other managed care organizations include hospice care as a benefit. In addition, through community contributions, memorial donations, and foundation gifts, many hospices are able to provide patients who lack sufficient payment with free services. Other programs charge patients in accordance with their ability to pay.
Myth: After six months, patients are no longer eligible to receive hospice care through Medicare and other insurances.
Reality: According to the Medicare hospice program, services may be provided to terminally ill Medicare beneficiaries with a life expectancy of six months or less. However, if the patient lives beyond the initial six months, he or she can continue receiving hospice care as long as the attending physician recertifies that the patient is terminally ill. Medicare, Medicaid, and many other private and commercial insurances will continue to cover hospice services as long as the patient meets hospice criteria of having a terminal prognosis and is recertified with a limited life expectancy of six months or less.
Myth: Once a patient elects hospice, he or she can no longer receive care from the primary care physician.
Reality: Hospice reinforces the patient-primary physician relationship by advocating either office or home visits, according to the physician preference. Hospices work closely with the primary physician and consider the continuation of the patient-physician relationship to be of the highest priority.
Myth: Once a patient elects hospice care, he or she cannot return to traditional medical treatment.
Reality: Patients always have the right to reinstate traditional care at any time, for any reason. If a patient's condition improves or the disease goes into remission, he or she can be discharged from a hospice and return to aggressive, curative measures, if so desired. If a discharged patient wants to return to hospice care, Medicare, Medicaid, and most private insurance companies and HMOs will allow readmission.
Myth: A patient needs Medicare or Medicaid to afford hospice services.
Reality: Although insurance coverage for hospice is available through Medicare and in 44 states and the District of Columbia under Medicaid, most private insurance plans, HMOs, and other managed care organizations include hospice care as a benefit. In addition, through community contributions, memorial donations, and foundation gifts, many hospices are able to provide patients who lack sufficient payment with free services. Other programs charge patients in accordance with their ability to pay.
Myth: I am afraid I will lose my Social Security benefits if I enter hospice.
Reality: No. Medicare pays for the hospice costs and Social Security payments are not affected.
Advance Directives Q & A
What are advance directives? “Advance directive” is a general term that refers to your oral and written instructions about your future medical care, in the event that you become unable to speak for yourself. Each state regulates the use of advance directives differently. There are two types of advance directives: a living will and a medical power of attorney.
What is a living will? A living will is a type of advance directive in which you put in writing your wishes about medical treatment should you be unable to communicate at the end of life. Your state law may define when the living will goes into effect, and may limit the treatments to which the living will applies. Your right to accept or refuse treatment is protected by constitutional and common law.
What is a medical power of attorney? A medical power of attorney is a document that enables you to appoint someone you trust to make decisions about your medical care if you cannot make those decisions yourself. This type of advance directive may also be called a “health care proxy” or “appointment of a health care agent.” The person you appoint may be called your health care agent, surrogate, attorney-in-fact, or proxy. In many states, the person you appoint through a medical power of attorney is authorized to speak for you any time you are unable to make your own medical decisions, not only at the end of life.
Why do I need an advance directive? Advance directives give you a voice in decisions about your medical care when you are unconscious or too ill to communicate. As long as you are able to express your own decisions, your advance directives will not be used and you can accept or refuse any medical treatment. But if you become seriously ill, you may lose the ability to participate in decisions about your own treatment.
What laws govern the use of advance directives? Both federal and state laws govern the use of advance directives. The federal law, the Patient Self-determination Act, requires health care facilities that receive Medicaid and Medicare funds to inform patients of their rights to execute advance directives. All 50 states and the District of Columbia have laws recognizing the use of advance directives.
What is a living will? A living will is a type of advance directive in which you put in writing your wishes about medical treatment should you be unable to communicate at the end of life. Your state law may define when the living will goes into effect, and may limit the treatments to which the living will applies. Your right to accept or refuse treatment is protected by constitutional and common law.
What is a medical power of attorney? A medical power of attorney is a document that enables you to appoint someone you trust to make decisions about your medical care if you cannot make those decisions yourself. This type of advance directive may also be called a “health care proxy” or “appointment of a health care agent.” The person you appoint may be called your health care agent, surrogate, attorney-in-fact, or proxy. In many states, the person you appoint through a medical power of attorney is authorized to speak for you any time you are unable to make your own medical decisions, not only at the end of life.
Why do I need an advance directive? Advance directives give you a voice in decisions about your medical care when you are unconscious or too ill to communicate. As long as you are able to express your own decisions, your advance directives will not be used and you can accept or refuse any medical treatment. But if you become seriously ill, you may lose the ability to participate in decisions about your own treatment.
What laws govern the use of advance directives? Both federal and state laws govern the use of advance directives. The federal law, the Patient Self-determination Act, requires health care facilities that receive Medicaid and Medicare funds to inform patients of their rights to execute advance directives. All 50 states and the District of Columbia have laws recognizing the use of advance directives.
Wednesday, June 11, 2008
Hospice
I have seen hospice at work in my family several times in the last ten years. My father was diagnosed with terminal brain cancer and given six months to live. We had never dealt with any type of illness in the family before. The wonderful staff at Hospice walked us through it with love and kindness. About a year ago my mother-in-laws’ Alzheimer’s was nearing the end. My father-in-law chose to keep her home and took care of her by himself for years. At 80 years old it was wearing him down. I remembered hospice, but thought it was for cancer patients only. I called anyway to see if they knew who to call. Hospice came out that very evening. We slept for the first time in days. Mama passed with dignity. I will never be able to express the gratitude for hospice. Seeing the hospice staff at work has let me know there are Angels among us. Thank You from the Bottom of our Hearts.
The Mason Family
The Mason Family
Tuesday, June 10, 2008
Lots to do.
Over the years, many persons, on learning that I am a hospice physician, develop a pained expression and ask, “How can you do that kind of work? Isn’t it awfully depressing?” This always prompts me to smile, which may be inappropriate for such a serious question, yet I have never found hospice work depressing. On the contrary, I feel that there is so much that can be done to help people coping with a serious condition that the rewards to all concerned…patient, family and caregivers…can produce a great deal of relief and even satisfaction. I know that other hospice workers: nurses, social workers, chaplains, therapists of various sorts and especially volunteers feel the same as I do. To watch pain be replaced by comfort, anxiety by relaxation, insomnia by sleep, anger and fear by equanimity…these are the rewards hospice workers experience. Certainly we all grieve the deaths of patients we have come to know and love. We grieve with the family and friends who have given so much to their loved one. Yet our sense of loss is tempered by the positive satisfaction derived from knowing that we made a difference. We helped to make things better for the patient and the family.
William M. Lamers Jr., M.D.
William M. Lamers Jr., M.D.
Monday, June 9, 2008
Hope to reassure others about how hospice can help
My husband Fred had been diagnosed with cancer in September, 2004. He started chemo treatment but after a short while and two trips to the hospital we made the joint decision to stop chemo and go for quality of life for the time left. We had discussed hospice with many people including nurses and some of the negative things we heard scared us more than anyone could know.
We were left with the thought that if we chose to go with help from hospice Fred's time would be very short….The decision to call Hospice was made jointly by the two of us. We called the doctor and asked him to contact hospice for us. From the very first visit we knew we had been misled and that now Fred would have the care and quality of life for the short time left. He was never overmedicated as we had been told he would be and nothing was done without our consent. All of the nurses, social workers and volunteers could not have done more.
Due to the wonderful care of hospice Fred was able to go "home" peacefully. As for myself, they again could not have done more in trying to help me over this very difficult time and I will always be grateful to all of them. If I had one wish it would be to be able to reach people that have the same fears about Hospice that Fred and I had and to be able to reassure them. Hospice gave him the quality of life for his last days that he would not have had without them.
[Note: The author of this story, Norma Burmaster]
We were left with the thought that if we chose to go with help from hospice Fred's time would be very short….The decision to call Hospice was made jointly by the two of us. We called the doctor and asked him to contact hospice for us. From the very first visit we knew we had been misled and that now Fred would have the care and quality of life for the short time left. He was never overmedicated as we had been told he would be and nothing was done without our consent. All of the nurses, social workers and volunteers could not have done more.
Due to the wonderful care of hospice Fred was able to go "home" peacefully. As for myself, they again could not have done more in trying to help me over this very difficult time and I will always be grateful to all of them. If I had one wish it would be to be able to reach people that have the same fears about Hospice that Fred and I had and to be able to reassure them. Hospice gave him the quality of life for his last days that he would not have had without them.
[Note: The author of this story, Norma Burmaster]
Sunday, June 8, 2008
up lifting email
When I drove up in my taxi cab at 2:30 a.m., the building was dark except for a single light in a ground floor window.
Under these circumstances, many taxi drivers would just honk once or twice, wait a minute, and then drive away. But I had seen too many impoverished people who depended on taxis as their only means of transportation. Unless a situation smelled of danger, I always went to the door. This passenger might be someone who needs my assistance, I reasoned to myself.
So I walked to the door and knocked. "Just a minute", answered a frail, elderly voice. I could hear something being dragged across the floor. After a long pause, the door opened. A small woman in her 90's stood before me. She was wearing a print dress and a pillbox hat with a veil pinned on it, like somebody out of a 1940s movie. By her side was a small nylon suitcase. The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets. There were no clocks on the walls, no knickknacks or utensils on the counters. In the corner was a cardboard box filled with photos and glassware.
"Would you carry my bag out to the car?" she said. I took the suitcase to the cab, then returned to assist the woman. She took my arm and we walked slowly toward the curb. She kept thanking me for my kindness. "It's nothing", I told her. "I just try to treat my passengers the way I would want my mother treated". "Oh, you're such a good boy", she said. When we got in the cab, she gave me an address, and then asked, "Could you drive through downtown?" "It's not the shortest way," I answered quickly. "Oh, I don't mind," she said. "I'm in no hurry. I'm on my way to a hospice". I looked in the rear-view mirror. Her eyes were glistening. "I don't have any family left," she continued. "The doctor says I don't have very long." I quietly reached over and shut off the meter. "What route would you like me to take?" I asked.
For the next two hours, we drove through the city. She showed me the building where she had once worked as an elevator operator. We drove through the neighborhood where she and her husband had lived when they were newlyweds. She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl. Sometimes she'd ask me to slow down in front of a particular building or corner and would sit staring into the darkness, saying nothing. As the first hint of sun was creasing the horizon, she suddenly said, "I'm tired. Let's go now." We drove in silence to the address she had given me.
It was a low building, like a small convalescent home, with a driveway that passed under a portico. Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move. They must have been expecting her. I opened the trunk and took the small suitcase and box to the door. The woman was already seated in a wheelchair. "How much do I owe you?" she asked, reaching into her purse."Nothing," I said "You have to make a living," she answered. "There are other passengers," I responded. Almost without thinking, I bent and gave her a hug. She held onto me tightly. "You gave an old woman a little moment of joy," she said."Thank you." I squeezed her hand, and then walked into the dim morning light. Behind me, a door shut. It was the sound of the closing of a life. I didn't pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day, I could hardly talk.
What if that woman had gotten an angry driver, or one who was impatient to end his shift? What if I had refused to take the run, or had honked once, then driven away? On a quick review, I don't think that I have done anything more important in my life. We're conditioned to think that our lives revolve around great moments. But great moments often catch us unaware-beautifully wrapped in what others may consider a small one.
Under these circumstances, many taxi drivers would just honk once or twice, wait a minute, and then drive away. But I had seen too many impoverished people who depended on taxis as their only means of transportation. Unless a situation smelled of danger, I always went to the door. This passenger might be someone who needs my assistance, I reasoned to myself.
So I walked to the door and knocked. "Just a minute", answered a frail, elderly voice. I could hear something being dragged across the floor. After a long pause, the door opened. A small woman in her 90's stood before me. She was wearing a print dress and a pillbox hat with a veil pinned on it, like somebody out of a 1940s movie. By her side was a small nylon suitcase. The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets. There were no clocks on the walls, no knickknacks or utensils on the counters. In the corner was a cardboard box filled with photos and glassware.
"Would you carry my bag out to the car?" she said. I took the suitcase to the cab, then returned to assist the woman. She took my arm and we walked slowly toward the curb. She kept thanking me for my kindness. "It's nothing", I told her. "I just try to treat my passengers the way I would want my mother treated". "Oh, you're such a good boy", she said. When we got in the cab, she gave me an address, and then asked, "Could you drive through downtown?" "It's not the shortest way," I answered quickly. "Oh, I don't mind," she said. "I'm in no hurry. I'm on my way to a hospice". I looked in the rear-view mirror. Her eyes were glistening. "I don't have any family left," she continued. "The doctor says I don't have very long." I quietly reached over and shut off the meter. "What route would you like me to take?" I asked.
For the next two hours, we drove through the city. She showed me the building where she had once worked as an elevator operator. We drove through the neighborhood where she and her husband had lived when they were newlyweds. She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl. Sometimes she'd ask me to slow down in front of a particular building or corner and would sit staring into the darkness, saying nothing. As the first hint of sun was creasing the horizon, she suddenly said, "I'm tired. Let's go now." We drove in silence to the address she had given me.
It was a low building, like a small convalescent home, with a driveway that passed under a portico. Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move. They must have been expecting her. I opened the trunk and took the small suitcase and box to the door. The woman was already seated in a wheelchair. "How much do I owe you?" she asked, reaching into her purse."Nothing," I said "You have to make a living," she answered. "There are other passengers," I responded. Almost without thinking, I bent and gave her a hug. She held onto me tightly. "You gave an old woman a little moment of joy," she said."Thank you." I squeezed her hand, and then walked into the dim morning light. Behind me, a door shut. It was the sound of the closing of a life. I didn't pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day, I could hardly talk.
What if that woman had gotten an angry driver, or one who was impatient to end his shift? What if I had refused to take the run, or had honked once, then driven away? On a quick review, I don't think that I have done anything more important in my life. We're conditioned to think that our lives revolve around great moments. But great moments often catch us unaware-beautifully wrapped in what others may consider a small one.
PEOPLE MAY NOT REMEMBER EXACTLY WHAT YOU DID, OR WHAT YOU SAID, ~BUT~THEY WILL ALWAYS REMEMBER HOW YOU MADE THEM FEEL.
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