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."

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.

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

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.