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.
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