HOMES AND LONG-TERM CARE
about Cynthia –
“Putting my mother in a nursing home was the hardest decision
I ever made. Ever,” said Cynthia Cooper, recalling the day just
over 3 years ago when she knew her mother could never return home.
aging and dying Americans end up in nursing homes and their families
are faced with overwhelming financial and medical decisions. Currently,
24 percent of Americans over the age of 85 live in a nursing home.
They face a series of challenges: Choosing the right home, finding
ways to make life meaningful in their new surroundings and, ultimately,
making decisions about how they will die.
Muriel R. Gillick,
M.D. is the Physician-in-Chief at the Hebrew Rehabilitation
Center for Aged in Boston, Massachusetts. She is also an
Associate Professor of Medicine at Harvard Medical School.
Dr. Gillick has written extensively on the topics of decision
making near the end of life and ethical and clinical issues
Len Fishman is President
and CEO of the Hebrew Rehabilitation Center for Aged in
Boston, Massachusetts. He is trained as an attorney and
early in his career served as General Counsel for the New
Jersey Association of Non-Profit Homes for the Aging.
homes are last stop for most Americans
Muriel Gillick and Len Fishman
“Putting my mother
in a nursing home was the hardest decision I ever made.
Ever,” said Cynthia Cooper, recalling the day just over
3 years ago when she knew her mother could never return
Her mother, Frances Zaft, had lived in her own apartment
in Randolph, Mass., with minimal outside help until, at
age 88, she underwent a hysterectomy. She sailed through
the surgery, only to develop a major infection a few days
later, leading to a prolonged hospital stay and transfer
to a rehabilitation facility. Weak, debilitated and depressed,
she needed help with dressing, going to the bathroom, even
getting out of a chair.
“The only alternative to her going to a nursing home would
have been moving in with me,” said Cynthia. “That would
have meant my husband moving out. She needed so much care.”
For people like Frances, who require skilled nursing care
as well as physical therapy, a nursing home is the only
answer. Currently, 24 percent of Americans over the age
of 85 live in a nursing home. According to projections by
Peter Kemper and Christopher Murtaugh, published in the
New England Journal of Medicine in 1991, 43 percent of Americans
over the age of 65 will live in a nursing home for some
period before they die.
They face a series of challenges: Choosing the right home,
finding ways to make life meaningful in their new surroundings
and, ultimately, making decisions about how they will die.
As Cynthia found out, the process can be a complex one.
Because her mother was a patient in the New England Sinai
Hospital, the social work department there matched her up
with a home. “It was clean and the care was good,” Cynthia
recalled, “but my mother wouldn’t eat the food there. There
was no Jewish-style cooking, nothing she was used to. That’s
when I realized I had to arrange for her to be admitted
to the Hebrew Rehab Center in Boston.”
Adjusting to nursing home life was not easy for mother or
daughter. Frances lived in a double room and complained
that her first roommate was downright nasty to her. Occasionally,
a lost male resident wandered into her room to use her bathroom.
“My mother was miserable at first,” Cynthia said. “But she
had a wonderful nursing assistant. She literally brought
my mother back to life. She made such a difference in her
mental stability. And, frankly, in mine.”
But that wasn’t the end of the decisions Cynthia would make
about her mother’s care. When Frances arrived at Hebrew
Rehab, the facility social worker asked her choose a health-care
proxy — the person doctors would turn to for help in making
difficult medical decisions if Frances were unable to make
her own. She readily selected her daughter.
Cynthia’s decision-making abilities were put to the test
early on in her mother’s stay. The nursing home physician
asked Cynthia whether cardiopulmonary resuscitation should
be attempted if her mother’s heart stopped and she was not
breathing. “We had talked about what my mother would want
in terms of medical care if she got sick again. Whenever
a friend developed a problem and had an operation or a procedure,
I would ask my mother, ‘Would you want that if you were
in her shoes?’ Mom told me that she wouldn’t want me to
keep her alive with machines. So I knew what she wanted.”
Many family members don’t find this decision an easy one,
even though, according to a 1989 study by Don Murphy and
colleagues in the Annals of Internal Medicine, the odds
of a nursing home patient surviving a cardiac arrest are
less than 3 percent. And the rare elderly survivor, reports
a 1996 article in the Archives of Internal Medicine, often
can no longer dress or walk independently.
Back in 1998, Cynthia thought any medical intervention short
of CPR would make sense for her mother. She hoped Frances
ultimately would regain her strength and emotional well-being.
Her goals for her mother were simple: To keep her going
and to help her remain as independent as possible.
Then Frances did what one of about every 300,000 people
over the age of 65 do each year — she broke her hip.
She was rushed to the hospital for surgery. During her mother’s
brief hospital stay, Cynthia discovered even first-class
hospitals often are not the best place for elderly nursing
“The hospital stay was horrible, really horrible,’’ she
recalled. “It was the weekend and the nursing staff was
minimal. My mother was in pain. Everyone was in and out
and no one seemed to care. No one knew her. Then she ‘sundowned’
— she became so confused every evening. She refused to eat.
She was incontinent in the bed. I came and found her in
soiled sheets and she looked at me and said, ‘Where were
you?’ It broke my heart.”
Cynthia decided then and there to avoid hospital care for
her mother in the future if at all possible.
“I called the doctor and told him it was time to concentrate
on comfort. He said he could write a ‘do not hospitalize’
order. Mom would still get medicines like antibiotics and
fluid pills if she needed them. But if she got sick, she
would be treated in the nursing home, in her own bed, with
nurses who knew her.”
Achieving comfort in the nursing home is not always easy.
A 1997 report by the Institute of Medicine revealed between
40 percent and 80 percent of nursing home residents experience
pain regularly, mostly because the staff may be reluctant
to use narcotics to relieve suffering. Cynthia said she
made sure to speak with the nursing home physician to get
the message across that controlling her mother’s symptoms
— especially her pain — was her primary goal.
Nursing homes are not always good places to die, though
24 percent of Americans over the age of 65 do just that,
according to a 2000 report from the Rand Center to Improve
Care of the Dying. Not only is pain control often inadequate,
but doctors generally don’t get involved in care. Some families
draw on support from a hospice program, which often will
send a nurse to make recommendations about symptom management
and provide a personal attendant for several hours a day
as the end draws near. Hospices typically offer counseling
to families as well as to patients.
For Cynthia, the center’s chaplain has been invaluable.
“I sit with Cynthia and her mother whenever I have the chance,”
says Hali Diecidue, who, together with a full-time rabbi,
offers religious services, pastoral counseling, study groups
and sing-alongs to the residents. “We don’t feel we have
to talk to Frances all the time. Often it’s enough just
to be with her.”
Smaller and non-denominational homes do not have their own
chaplains, but most have relationships with clergy who visit
regularly. For many family members of nursing home residents,
their own minister, priest or rabbi provide support.
Despite the decision to avoid hospitals and limit diagnostic
tests, Frances Zaft is very much alive. She sits in her
wheelchair, her white hair neatly coiffed, her clothes clean
and attractive. She wears a beaded necklace, a gift from
her grandson. Often she dozes. Periodically she looks through
her large round glasses and asks, “Can I have corn on the
Cynthia Cooper knows her mother is on the last leg of her
journey through life and she wants to make whatever time
her mother has left as comfortable and meaningful as possible.
At this point, says Cynthia, “it’s the little things that
count. Mom is wearing navy blue slacks and navy blue shoes.
She should be wearing matching socks. Touching matters —
those moments of physical contact.
“Treating my mother with respect counts,’’ Cynthia says.
“She may have trouble hearing and seeing. She may have difficulty
following your line of thought even if she can hear you.
But she’s not ‘honey’ or ‘dear.’ She’s a person with a family
and a history. She’s Frances Zaft.”
2001, Partnership for Caring, Inc.
Distributed by Knight Ridder/Tribune Information Services.
most people, nursing homes are like black boxes. You can’t tell
what’s inside, and they all seem alike. But there are important
differences, and it’s not that hard for a shopper to tease those
out to make an informed and thoughtful choice.
first thing to do is talk to people you trust: friends, a doctor,
a social worker — preferably people who have lots of contact
with nursing homes. They are in the best position to make meaningful
comparisons. Your state or county Offices on Aging are good
places to find listings and maybe get opinions “off the record.”
Long-term care ombudsman programs are also good sources of information.
whether it is important to you that a nursing home has a particular
affiliation — religious, ethnic, fraternal or otherwise. About
one-third of the nursing homes in the United States are nonprofit;
most of these are religiously sponsored and offer some clerical
and spiritual services. Many nursing homes will even try to
arrange for access to these services.
location, location. The axiom about real estate applies to nursing
homes as well: You want to pick a facility that friends and
relatives can visit as often as possible. Why? Because nothing
matters more to a resident than those visits, and because even
at very good nursing homes, staff pay more attention to residents
whose families are present. Those interactions help staff focus
on “what’s left rather than what’s lost,” as nursing home professionals
put it. That is, the staff sees a fuller human being when a
resident interacts with the people who love her. Family members
and staff can really bond with each other, and everyone starts
to feel that they’re part of a team.
the homes you are considering. Talk with the nursing home staff,
and, more important, with the residents and their family members.
Ask to talk to members of the residents’ council. They will
be among the more lucid and verbal informants, with an insider’s
view broader than most. Here are two good questions to ask staff:
are you going to accommodate what’s unique about my Mom? If
she wants to eat breakfast later than your norm, or be wheeled
outside at a certain time of day, how will you handle that?”
Get a sense of whether she’ll have to conform to the facility,
or whether it will confirm to her, or at least meet her halfway.
there an active volunteer program?” If there is, that’s both
a meaningful sign of community support as well as a significant
source of stimulation for residents.
to see the two most recent state and federal inspection reports.
This is public information. If there are serious violations,
you want to know.
to what many Americans believe, Medicare coverage for nursing
home care is extremely limited. Many of the nursing home residents
covered by the Medicaid program started by paying with private
funds until “spending down” — using up their assets — and qualifying
don’t beat yourself up. Remember that 80 percent of long-term
care in the United States is provided by families in their own
homes. When families make the choice to put a loved one in a
nursing home, it’s because they’ve honestly run out of alternatives.
Console yourself with this truth: Almost no one puts a mother
or father in a nursing home until it’s absolutely necessary.
You can figure out which facility will give your loved one the
best quality of care and the best quality of life. And then
remember that your own attentiveness to your loved one at the
nursing home you choose can make a world of difference.
Alternatives to nursing homes:
Just 10 years ago, if you were old and frail and couldn’t get
by without help, chances were you would end up in a nursing
home — whether or not you really needed that level of care.
That world is gone. In the last decade there has been an explosion
of alternatives to nursing homes for long-term care. The tradeoffs
are pretty clear: Nursing homes generally offer more institutional
surroundings and more care. Assisted living facilities offer
more home-like settings, with less care. Assisted-living residents
who become too frail must move on to a nursing home. So it’s
important that prospective residents and their families understand
up front that once a resident needs more intensive care, he
or she will be asked to leave. While seven in 10 nursing home
residents are covered by Medicaid, assisted living is mainly
for those who can afford it.
Here are some brief descriptions, from the most independent
to the most intensive.
care. Most seniors want to remain independent — in their own
homes — for as long as possible. In-home assistance can be as
limited as Meals on Wheels or as extensive as around-the-clock
nursing care. The challenge is putting all the pieces together.
Home health agencies provide personal care and nursing services.
Often, though, what a senior really needs is help with things
like housekeeping, transportation and adapting the home to make
it handicap-accessible. Care managers and eldercare service
companies are sprouting up to fill this need.
senior housing. There are nearly 1.5 million units of subsidized
senior housing throughout the United States for seniors with
low to moderate incomes. Many of these apartment buildings offer
transportation, shopping, laundry and other services. Some provide
meals. These may be the most cost-effective facilities — the
best of them can extend a senior’s independence for years. Because
they are so popular, seniors must plan ahead: waiting lists
can be years long.
day care. For the frail senior, especially a patient with dementia,
whose working family can provide care at night and in the morning,
these programs provide structure, meals and, in some case, nursing
care and medical monitoring during the day.
care retirement communities. These self-contained senior communities
provide housing, meals, activities, medical care and, if necessary,
long-term care. These communities are for seniors who think
ahead: Applicants must be capable of functioning independently
when they enter. There’s usually a significant entrance fee
but, in an all-inclusive “life care” facility, residents are
getting care for life in a community that will help them live
as independently as possible for as long as possible. Some facilities
offer services a la carte — they charge less up front and more
later if the resident needs more services.
and care homes. This is the toughest category to describe because
it is so diverse. These group living arrangements offer shelter,
meals and help with eating, walking and bathing. But they can
range from upscale, hotel-like facilities to not-so-appealing
boarding homes. Licensing and monitoring are highly variable.
living. For the frail senior who can no longer live independently
but isn’t ready for the intensive care that a nursing home provides,
this can be an attractive choice. Assisted living — “nursing
home light,” as some professionals call it — offers a more homelike
environment, but with less staff, nursing and medical care than
a nursing home. Residents generally live in private apartments,
with a bathroom and modest kitchen. Staff members help them
with bathing, dressing, eating and other activities.
make the best choice, do your homework. For services in your
area, try The Eldercare Locator, operated by the Administration
on Aging of the U.S. Department of Health and Human Services,
- What are the major
factors leading an older person to enter a nursing home? Under
what circumstances might an assisted living facility, a continuing
care retirement community, help at home, or a move into a relative’s
home be a viable alternative?
- Nursing home residents
need to make decisions about how much medical care and what
kind of care is appropriate for them. If the elders cannot make
these choices themselves, their health care proxy or next of
kin are asked to discuss these issues. What are some of the
factors that may influence decisions to limit care?
- What are some
of the problems that nursing home residents may experience if
they are hospitalized? How might these problems be prevented?
In what circumstances might the elder be better off staying
in the nursing home?
- What are some
of the difficulties that nursing homes may experience in trying
to care for dying residents? How might these be overcome?
- Cynthia Zaft is
extremely involved in her mother’s care, visiting her mother
several hours a day, six days a week. What are some of the ways
that her involvement enables her mother to adjust to nursing
home life, and how might other family members adapt Cynthia’s
experience to their situation?
Zaft has significant cognitive impairment and is unable to participate
actively in decisions about her care. She gave her daughter
guidance on how to make choices for her through their previous
discussions. What are some of the ways in which Frances was
able to communicate her wishes to her daughter and how might
other families draw on previous experiences to guide decision-making?
Kemper, P., & Murtaugh, C. (1991). Lifetime use of nursing
home care. New England Journal of Medicine,
324, 595-600. This remains the most widely cite article
on the life-time risk of entering a nursing home.
Department of Health and Human Services. Your Guide to Choosing
a Nursing Home. Available on the web: http://www.medicare.gov/Publications/Pubs/pdf/nhguide.pdf
This government publication provides valuable information
about how to look for a nursing home.
J. (2000). Changing places: A journey with my parents into
their old age. New
York: Riverhead Books. Written by a journalist, both of whose parents
lived in a nursing home, this book is a compassionate and insightful guide
for family members facing the challenges of their parentsaging.
The author offers advice on such topics as helping her
parents adjust to the nursing home, talking to her parents
about dying, and how to think about discontinuing treatment.
Gillick, M. (2001). Lifelines: Living longer, growing
frail, taking heart.
New York: Norton. Written by a physician specializing in care
of older people, this book relates the stories of four
older individuals in the final stages of life. It provides a framework
for thinking about the many challenging issues that elders and
their families face, including decisions to move to an assisted
living facility or nursing home and decisions to limit medical
Murphy, D., Murray, A., Robinson, B., & Campion, E. (1989).
Outcomes of cardiopulmonary resuscitation in the elderly.
Annals of Internal Medicine,
111, 199-205. The now classic article examining
survival rates in older people undergoing attempted cardiopulmonary
Hannan, E., Magaziner, J., Wang, J. et al. (2001).Mortality
and locomotion 6 months after hospitalization for hip fracture.
Journal of the American Medical Association,
285, 2736-2742. A recent study documenting just
how devastating a hip fracture is likely to be for the
M. (1993). Hazards of hospitalization of the elderly. Annals of
118, 219-223. This study describes the untoward events
that elderly patients are at risk of experiencing in the hospital
and discusses why they occur and how they might be prevented.
A., Lapane, K., Gambassi, G. et al. (1999). Correlates and management
of nonmalignant pain in the nursing home. Journal
of the American Geriatrics Society,
47, 936-42. This is the first comprehensive examination
of the extent to which pain (other than that due to cancer)
is under-treated in the nursing home.
E., Peirs, V., & Wetle, T. (1998). Discussion about end-of-life
care in nursing homes. Journal of the American Geriatrics
46, 1235-41. A recent article reviewing the extent
to which discussions about end-of-life care take place in the
- Kidder, T. (1993).
Old friends. Boston:
Houghton Mifflin. A moving look at the world of the nursing
home from the perspective of a resident, written by the
prize-winning author of numerous portraits of American life.
Links: You must be connected
to the internet for these links to work.
Offers the Nursing Home Compare database, with information about
every Medicare/Medicaid certified nursing home in the country, organized
by state, county and city.
“Your Guide to Choosing a Nursing Home”
A booklet available from the Health Care Financing Administration
of the U.S. Department of Health and Human Services
7500 Security Boulevard
Baltimore, MD 21244