Topic:

NURSING HOMES AND LONG-TERM CARE

In This Session:

Story 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.

Increasingly, 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.

About the Authors:

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 in geriatrics.

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.

Readings:

Nursing homes are last stop for most Americans

By 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 home.
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 home patients.
“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 cob today?”
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.

Tips:

For 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. 

Here’s how:

  1. The 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. 
  2. Consider 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.
  3. Location, 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.
  4. Visit 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: 
  5. “How 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.
  6. “Is 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.
  7. Ask to see the two most recent state and federal inspection reports. This is public information. If there are serious violations, you want to know.
  8. Contrary 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 for Medicaid. 
  9. Finally, 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.
  1. In-home 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.
     
  2. Subsidized 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.
     
  3.   Adult 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.
     
  4.   Continuing 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.
     
  5. Board 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. 
     
  6.   Assisted 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. 
  7. To 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, (800) 677-1116.

Discussion Questions:

  1. 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?
  1. 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?
  1. 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?
  1. What are some of the difficulties that nursing homes may experience in trying to care for dying residents? How might these be overcome?

Points and Observations:

  1. 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?
  2. Frances 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?

References:

  1. 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.    
        
  2. U.S. 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.
            
  3. Kramer, 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.
            
  4. 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 care.
        
  5. 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 resuscitation.    
        
  6. 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 elderly.  
        
  7. Creditor, M. (1993). Hazards of hospitalization of the elderly. Annals of Internal Medicine, 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.   
        
  8. Won, 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. 
        
  9. Bradley, E., Peirs, V., & Wetle, T. (1998). Discussion about end-of-life care in nursing homes. Journal of the American Geriatrics Society, 46, 1235-41. A recent article reviewing the extent to which discussions about end-of-life care take place in the nursing home.
        
  10. 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.

Medicare’s Website 
Offers the Nursing Home Compare database, with information about every Medicare/Medicaid certified nursing home in the country, organized by state, county and city.
www.medicare.gov/Nursing/Overview.asp


“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
1-800-633-4227 
www.medicare.gov/Publications/Pubs/pdf/nhguide.pdf