| In This
Session:
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| Story
about Madeleine and John –
Like most Americans, Madeleine Corbett and her husband, John Meneghello,
had no idea what the term palliative care meant. And like most
Americans, they found out only when critical illness struck.
Although
palliative care is well established in many other countries, most
of the American public and many professionals still know little
about it. Good palliative care not only relieves pain and other
symptoms and offers practical assistance for patients and caregivers
in the home, it encourages discussion about values and decisions
in planning for medical care, and respects these decisions after
they are made. And, at the end of life, it offers opportunities
for closure — even growth — and helps the bereaved deal with loss. |
| About
the Author:
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| 
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Russell K. Portenoy,
M.D., is Chairman, Department of Pain Medicine and Palliative
Care, Beth Israel Medical Center, and Professor of Neurology,
Albert Einstein College of Medicine. He is a Trustee of
the American Board of Hospice and Palliative Care, past
president of the American Pain Society, and Secretary of
the International Association for the Study of Pain. Dr.
Portenoy is Editor-in-Chief of the Journal of Pain and Symptom
Management, and author or editor of 12 books and more than
350 papers devoted to the fields of pain management, symptom
assessment, opioid pharmacology, and palliative care. |
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| Readings: |
| Care
to ease the final days
By Russell K. Portenoy |
| Like most Americans,
Madeleine Corbett and her husband, John Meneghello, had
no idea what the term “palliative care” meant. And like
most Americans, they found out only when critical illness
struck.
In September 1999, Corbett developed a hacking cough that
led to a diagnosis of lung cancer. She was only 56 and otherwise
healthy, and she wanted to fight hard. So her oncologist
at the Beth Israel Medical Center in New York treated her
aggressively with radiation and chemotherapy. Soon after
the diagnosis, Madeleine’s cough became so severe that her
oncologist called in a palliative care specialist in the
hospital’s Department of Pain Medicine and Palliative Care.
Palliative care describes health care that tries to relieve
pain and suffering for patients with life-threatening illnesses
while giving them and their loved ones information and support.
“Palliative care is essential for all patients living with
a life-threatening illness,” said Dr. Lauren Shaiova, specialist
in the Department of Pain Medicine and Palliative Care at
Beth Israel Medical Center. “They and their families need
a type of care that helps them have a good quality of life
for as long as the disease continues, and also prepares
them for the inevitability of death.”
Typically, the palliative care specialist works with a specially
trained team that includes a doctor, nurse, social worker
and chaplain. Often pharmacists or rehabilitation specialists
become involved.
For the year and a half that Madeleine lived with the disease,
her doctor and palliative care team worked together to help
with one distressing problem after another.
“We’ve had people, doctors, tell us it’s just a cancer,
there’s nothing we can do,” Corbett said several months
before she died. “(But) there is no reason for you to be
in pain. I don’t want to know that six months down the road
… I’m going to die miserably. … Most of this whole thing
is the quality of life I want.”
According to government statistics, most of the 2.5 million
people who die annually in the United States have incurable
diseases, such as cancer, AIDS, or diseases of the heart,
lungs, liver, kidneys or nervous system. Most deaths follow
long illnesses, extending over weeks, months or years, leaving
a lot of time for pain, emotional upheaval, isolation and
spiritual distress that rob any joy from the last days.
It’s a situation the health care system is just beginning
to recognize. Although palliative care is well established
in many other countries, most of the American public and
many professionals still know little about it. As a result,
few patients are requesting it and most institutions are
not equipped to provide it.
Good palliative care not only relieves pain and other symptoms
and offers practical assistance for patients and caregivers
at home, it encourages discussion about values and decisions
in planning for medical care, and respects these decisions
after they are made. And, at the end of life, it offers
opportunities for closure — even growth — and helps the
bereaved deal with loss.
That’s what John Meneghello experienced as he helped nurse
his wife through her illness.
“The doctor was able to control her coughing,” he said.
“There was really no pain. We were able right up to the
end to go out to dinner, take strolls, go to a movie once
in a while. She was able to do a lot of things, which were
wonderful. She got closer to her brothers.” 
To achieve this, symptom control is critical. Corbett’s
cough, chest pain, shortness of breath and fatigue were
lessened by a sophisticated mix of medicines.
And just as importantly, the team was willing to talk about
dying while helping Corbett and Meneghello continue living.
When a difficult decision had to be made about whether to
proceed with a second course of brain radiation to treat
the spread of the cancer, Corbett had candid conversations
with her physician that allowed her to weigh the disadvantages
— the possibility of more fatigue, nausea and headaches
— against quality time with her husband. She decided against
it.
For some patients, knowing the disease is incurable drives
a need to talk about the end of life, to express hopes and
fears, consider religious or existential issues or think
about ways of helping the family or contributing something
that will outlast themselves.
Studies have shown that most doctors have difficulty with
this communication. A training program in palliative care
developed by the American Medical Association, Education
of Physicians in End of Life Care, spends as much time teaching
communication skills as symptom control. A similar training
program for nurses is now being developed.
The medical profession is slowly getting on board in other
ways. The American Board of Hospice and Palliative Medicine
was established more than six years ago to set standards
for specialist physician training and certification. To
be certified, a doctor must have broad experience in caring
for dying patients and pass a test that evaluates knowledge
of symptom control, communication and ethics. More than
800 doctors are now certified.
Soon, experts say, this medical discipline will have standing
like any other specialty, a situation that now exists in
the United Kingdom, Australia and several other countries.
Recognizing the need for change, many hospitals are now
establishing specialist palliative care consultation teams.
According to a 1999 survey by the American Hospital Association,
20 percent of hospitals now have some type of specialized
service to help patients and families with end-of-life care.
Experts agree that progress will be slow. Finding a primary
doctor who understands the principles of palliative care
is key. This has been particularly important for Joan Beerman,
an independent, 54-year-old woman who has been living with
advanced cancer for more than six years. “I want my doctors
to be focused on quality of life … (I want) my values respected
and … consideration for my family.”
Palliative care specialists encourage all patients to talk
about the kind of care they want and plan for the possibility
that health decisions will be needed most when they can’t
speak for themselves. Corbett told her doctors that her
husband John would make decisions about her care if she
no longer could.
Experts in palliative care also emphasize the need for family
support. A recent study showed that about one-third of caregivers
have serious unmet needs, and another noted that one-third
of families lose all their savings while caring for a loved
one with a serious illness. Because of this impact, palliative
care takes the whole family into consideration.
The palliative care philosophy is the same one that guides
hospice care, which offers care, usually at home, at the
end of life. In the United States, hospice care was established
almost 30 years ago, and about a decade later, Medicare
and Medicaid offered reimbursements. In contrast to palliative
care, patients can elect the hospice benefit only if they’re
not receiving aggressive, life-prolonging therapies and
are certified by their physician as having less than six
months to live. For those who qualify, hospice can provide
palliative care at home through a team of professionals
and services.
Ideally, as Madeleine Corbett and John Meneghello learned,
palliative care and hospice can be combined to help the
patient and family throughout the course of an illness.
Soon after her diagnosis, Corbett learned about the Jacob
Perlow hospice, a part of the Beth Israel palliative care
program, and knew it was an option when the time was right.
Three months before her death in March, Corbett entered
the hospice program, remaining at home with regular visits
from the hospice team. When she became weaker and the treatment
became more complicated, she turned to the hospice and palliative
care inpatient unit at Beth Israel, which allowed her to
remain home during the last days of her life. Days later,
she died comfortably, her husband at her side.
For John Meneghello, looking back on his wife’s long illness
three weeks after her death, expert palliative care provided
“an easing of tension, an easing of what people go through.”
2001, Partnership for Caring, Inc.
Distributed by Knight Ridder/Tribune Information Services.
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|
| Tips: |
| If
you find yourself diagnosed with a life-threatening illness, you
can ask for palliative - or comfort - care at any point in your
treatment to get the most quality of life. And, experts recommend,
the sooner the better. “(Palliative care) does not have to be
reserved for the last weeks or the last months of life,” said
Ronald Schonwetter, chairman of the American Board of Hospice
and Palliative Medicine and professor at the University of South
Florida College of Medicine. Your doctor can provide palliative
care or, in some instances, may refer you to a specialist or palliative
care team, available in many hospitals.
Remember: Asking for palliative care doesn’t mean you’re giving
up on efforts to prolong your life. What you will be doing is
recognizing that your psychological, social and spiritual needs
are just as important as treating your disease.
Here are some other tips:
-
Recognize
that pain is not an unavoidable part of the disease. It nearly
always can be controlled with medicines or more sophisticated
treatments.
-
Understand
that narcotics offer the best treatment for pain for most people.
Don’t be afraid to use them or other strong medicines. When
used appropriately, these drugs are safe, rarely cause problems
with addiction and can work for as long as you need them. Your
doctor should explain how to use them safely and effectively.
Don’t hesitate to ask for a referral to another doctor if yours
is unable or unwilling to help.
- Appoint
a health care surrogate as soon as you can. Choose a family
member or a friend, but it should be someone you can count on
to make your wishes for treatment known should you become incapable
of making them yourself. Discuss your options and how you want
them handled before there is a crisis. For example, would you
want to be put on life-support to be kept alive?
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| Discussion Questions: |
- After
she received a diagnosis of incurable lung cancer, Madelaine
Corbett and her husband, John Meneghello, knew that they wanted
aggressive medical treatment—to prolong life and leave the door
open for a miracle—and also care that addressed her needs for
a good quality of life. What quality of life concerns
were important to this couple early in the disease, and then
later, when the disease became more advanced?
- Palliative
care is an approach to the treatment of people with life-threatening
illnesses, and their families. It focuses on quality of
life throughout the disease, and comfort and support as the
disease becomes advanced and death seems more imminent. What
are the specific types of help that professionals may provide
in offering the best palliative care possible?
- Control
of symptoms, like shortness of breath and pain, were very important
to Madeleine Corbett and her husband. What did the knowledge
that symptoms could be controlled allow this couple to do at
the end of life that helped them make it through the experience?
- When Madeleine
Corbett became sick, she and her husband had never heard of
palliative care, and they thought that “hospice” was a place
you go to die. They learned a great deal about both palliative
care and hospice, and how the two relate in the United States.
If you were Madeleine Corbett and were looking back on the experience
of living with, and then dying from, a serious illness, what
would you say that you learned about the goals of palliative
care and hospice, the systems that now exist to bring palliative
care and hospice to sick people, the barriers that many people
still encounter in trying to find this care, and the things
that people and their families should do to ensure that palliative
care and hospice is available?
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| Points
and Observations:
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- Madeleine
Corbett knew that she was very sick and she wanted the best
medical treatments for the disease that she could find.
She also knew, however, that she was likely to die from this
disease and she wanted a type of care that managed her symptoms,
focused on her emotional and spiritual well being, provided
practical support at home, and always respected her own ability
to make decisions about her care.
- John
Meneghello took time from work to care for his wife.Becoming
a caregiver for a person you love who is sick and is likely
to die is a very difficult transition.He was greatly helped
by having access to specialists in palliative care, including
a physician and, ultimately, a hospice team.His ability to be
there for his wife was preserved, in part, because he had access
to professionals who had the skills to provide comfort when
symptoms were severe, offered support and help at home, and
finally provided total support when death was imminent.
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| References: |
- Abrahm,
J. L. (2000). A physician's guide to pain and symptom management
in cancer patients. Baltimore: Johns Hopkins University
Press. Written for physicians in a style accessible to
all professionals and informed nonprofessionals, this book describes
the state of the art in pain and symptom management. It
addresses the difficult clinical problems that occur at the
end of life and illustrates many points with useful vignettes.
- Lynn, J.,
& Harrold, J. (1999). Handbook for mortals: Guidance
for people facing serious illness.
New York: Oxford Press. This book is written for nonprofessionals.
It discusses a broad array of problems encountered by patients
with life-threatening illnesses and their families. If
offers practical suggestions for solving these problems and
illustrates these solutions with vignettes.
- Webb, M.
(1997). The good death: The new American search to reshape
the end of life. New York: Bantam Books. Written for the
general public, this book describes a range of problems encountered
by those with advanced illness and uses vignettes to describe
the benefits of optimal palliative care.
- World Health
Organization (1998). Symptom relief in terminal
illness. Geneva: World Health Organization.
This is a concise book written for professionals and presents
an international consensus about the appropriate medical approach
to the management of symptoms caused by advanced diseases.
- Committee
on Care at the End of Life, Division of Health Care Services,
Institute of Medicine, M. J. Field and C. K. Cassel (Eds.) (1997).
Approaching death. Washington DC: National Academy
Press. This book describes the conclusions of an expert
panel established by the United States Institute of Medicine
to evaluate the state of end-of-life care. It provides
an up-to-date definition of palliative care and is a clear statement
about the need for change in the health care system.
- Doyle
D., Hanks, G. W., & MacDonald, N. (Eds.). (1998).
Oxford textbook of palliative medicine (2nd ed.). Oxford,
Oxford University Press. The first definitive textbook
on palliative medicine, written largely for physicians.
Comprehensively discusses the knowledge base for palliative
care.
- Ferrell,
B. R. , & Coyle, N. (Eds.). (2001). Textbook of palliative
nursing. Oxford: Oxford University Press. A comprehensive
textbook on palliative care, written for nurses.
- Billings,
J. A. (1998). What is palliative care? Journal of Palliative
Medicine, 1,
73-83. A paper written for professionals that critically
examines the definition of palliative care.
- Cassell,
E. J (1999). Diagnosing suffering: A perspective. Annals
of Internal Medicine, 131, 531-534. This is a concise
article, written for professionals, that discusses the assessment
of suffering in clinical practice. It highlights the importance
of recognizing differences among people with serious illnesses
and emphasizes the need for the health care professional to
listen attentively and to understand the nature of the persons
pain.
- Meyer,
M.M., & Derr, P. (1998). The comfort of home.
Portland, Oregon: CareTrust Publications. A manual
written for caregivers that provides practical advice for people
caring for a loved one with a progressive illness.
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| Links:
You must be connected to the internet for these links to work.
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| Palliative
Care Overview
Provides an overview of palliative care and pain treatment.
www.medbroadcast.com/health_topics/death_dying/
American Medical Association, Institute for Ethics
EPEC (Education for Physicians on End of Life Care Project)
Offers information on end-of-life care education for professionals.
515 N. State St.
Chicago, IL 60610
(312) 464-4979
www.ama-assn.org
American Board of Hospice and Palliative Medicine
Provides information on palliative care and a directory of ABHPM
certified physicians.
9200 Daleview Court
Silver Spring, MD 20901
(301) 439-8001
www.abhpm.org
Center to Advance Palliative Care
Search the latest resources in palliative care available to hospitals
and health care systems.
Mount Sinai Hospital
One Gustave L. Levy Place, Box 1070
New York, NY 10029-6547
www.capcmssm.org
National Hospice and Palliative Care Organization
Provides a search for palliative care and hospice, as well as
statistics, resources and information.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500
www.nhpco.org
Palliative Care Corner
Offers resources for patients and providers.
13947 Silven Ave NE
Bainbridge Island, WA 98110
(206) 855-8026
www.painconsult.com |
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