Dr. G. Allen Power, M.D., FAACP, an internist, a geriatrician, and clinical associate professor of medicine at the University of Rochester, shared his insights on how patients in Chicago’s North Shore Suburbs select home care for family. He is the author of “Dementia Beyond Drugs: Changing the Culture of Care” and is in the film “Alive Inside.”
Research shows that a primary care physician of the person needing care is the most influential party when people are seeking advice on where to turn for care after a diagnosis or hospitalization. Dr. Power explained how he has responded when asked about long-term care.
HWCG: Do patients typically ask you for insight on long-term care options or do you tell them they will need to consider a long-term care option?
AP: I have most recently been working in nursing homes, but when I was in private practice, the most common reason for moving to a nursing home among my patients was after a hospitalization, when the person’s health and functional ability had changed and she could no longer return home.
In the years since, this still appears to be the situation for the majority of the people I saw moving into my nursing homes. When I did an audit of this several years ago, I found that about 2/3 came directly from the hospital, and many more from an assisted living community. Only 10% came directly from home.
I am often asked by friends and acquaintances: “How do I know if my loved one is ready for a nursing home or assisted living?” My response centers on the various aspects of well-being I describe in my books and seminars. If the home situation is such that these aspects of well-being are being seriously compromised, or if the person is requiring sedating medications in order for the family to manage at home, then it is likely she might be better off in another living situation, and that staying at home may do more harm than good. However, if the family is “going it alone” and doing poorly, the addition of home care services might be the solution to successfully keeping someone at home longer.
HWCG: When does the subject of long-term care typically come up with a patient and/or their family with you? (Long before it’s needed or after a diagnosis?)
AP: I have found that many family members will try to keep their loved one at home in their care for as long as possible. I think the numbers above support the fact that it is often a crisis situation that forces the move–very few people “plan ahead” for a smooth transition while things are stable. Part of this reluctance to plan a move is due to the family’s devotion to the care of their loved one; but it is also partly due to the fear or dislike of nursing homes that our institutional model has created in the public over the years.
While the desire to keep someone at home is admirable, holding on past the point where one can safely do so often brings the unintended result of the person having to move to a nursing home at precisely the time when she is least able–physically and psychologically–to handle it. Acute illness or injury resulting in hospitalization carries a high risk of delirium (which is associated with high 1-year mortality rates) and many other complications of hospitalization for frail elders, including poor nutrition, muscle weakness, skin breakdown, and loss of continence.
HWCG: Do you find that patients and their loved ones are educated on long-term options?
AP: I do not think most people have the information they need in order to know where a loved one could be happiest and best served. Most websites tout the excellent “care” provided and may also advertise an attractive campus, but what is often missing is the information about what they can do to support those life-affirming aspects of well-being that so many of us take for granted.
For example, will my loved one be well-known, and be seen and treated as an individual? Will she have dedicated, familiar staff who build nurturing relationships with her? Will she still have the ability to choose how to spend her days, when to arise, go to bed, eat meals, or be able to go outside as desired? Will she be engaged in meaningful ways, not just in generic group activities that do not meet her needs and desires? Will she still have the opportunity to grow and experience new things, and to embrace those simple pleasures that bring her joy?
These questions are often overlooked in homes that focus more on tasks and clinical processes, and elders and families need to know what questions to ask to help see what life will truly be like in the home. There are many resources to help outline these important considerations. A sample list of questions to consider comes from a Rochester NY initiative that I helped to launch: http://www.takeiton4mom.com/key_questions.html
HWCG: What questions do people have for you about different long-term care options—do they think that inviting an elder loved one to live with them is the best idea? Have they ever heard of home care and understand what it is and how it’s different than home health care or do they think a nursing home is the only option?
AP: Most families I have met would prefer to keep a loved one in the community, if they could do so safely. There is a maze of home-based services, and many people are at a loss to know where to start. Most would not be able to differentiate between home care and home health care, and most hospitals tend to refer to the latter, due to post-discharge nursing needs, such that long-term home care options may not be discussed in those situations. Some communities have a resource–like Lifespan of Greater Rochester where I live–which provides information, counseling, and referrals to a variety of services, depending on a person’s needs.