As a psychologist observing the effects of medical interventions on the mental health of the long-term care resident, I often ask, “Is this aggressive procedure helping?”
Such a well-intended question can prompt the team to reconsider the course of treatment or to affirm that care is in line with the wishes of the resident and their family.
Conversely, I do what I can to encourage my residents to comply with medical recommendations. When a resident presents with end-stage renal disease (ESRD) and the inevitable recommendation of hemodialysis is given, I work with them to adjust to this turn of events.
That’s why I was surprised to read in Paula Span’s “New Old Age” article in the New York Times last week, “Learning to Say No to Dialysis,” that dialysis isn’t always the best course of treatment for older patients.
Span reports that while dialysis can be very successful for younger and healthier patients, about 40% of patients with ESRD over the age of 75 die within a year and only 19% survive over four years. One study found that 58% of nursing home residents died within a year. Meanwhile, 61% of patients in a Canadian study said they regretted starting dialysis.
What leads to regrets tend to be the following factors, which can contribute to feelings of depression among those on a renal program:
• Physical symptoms such as pain, fatigue, nausea and headaches
• The amount of time spent on dialysis
• Inability to travel
• Dietary restrictions
Span quotes nephrologist Dr. Alvin H. Moss, who notes, “Patients are told, ‘You have to go on dialysis or you’ll die,’ rather than, ‘You could have up to two years without the treatment, without the discomfort, with greater independence.’” I’ve been part of teams that have told residents the exact words of that first message.
For older patients, particularly those with other health problems, Dr. Moss asserts that medical management might be a way for them to focus on extending their quality of life and avoiding the discomforts of dialysis. The American Society of Nephrology suggests discussing this alternative to dialysis with patients through a shared decision-making process, as noted in their Choosing Wisely guidelines.
Facilitating treatment discussions
ChoosingWisely.org is an initiative of the American Board of Internal Medicine whose goal is to spark educated conversations between providers and patients through their series of lists called, “Things Physicians and Providers Should Question.” Since its inception in 2012, more than 70 medical specialty societies have offered guidelines for decision-making about a wide variety of illnesses.
LTC providers will find there valuable guidance such as a list regarding general medical care of elders from AMDA — The Society for Post-Acute and Long-Term Care Medicine, as well as information to provide for families to aid discussions about care decisions. For example, there’s advice on when to end cancer treatment and on when to consider feeding tubes for people with Alzheimer’s disease.
Reducing stressors of dialysis programs
For ESRD patients who have come through the shared decision-making process and want to pursue dialysis, in-house dialysis programs offer the possibility of daily rather than thrice weekly treatment and thus allow for a more liberal diet. In-house dialysis also reduces the amount of time spent traveling to and from dialysis centers and involves shorter dialysis sessions so that people can enjoy more of their usual activities. Various operators provide services within skilled nursing settings and some can also train capable elders to provide their own treatment at home.
Adding aerobic exercise to a dialysis program has been shown in several studies to reduce symptoms of depression, so it’s a component that could be considered for elders on dialysis.
End of life teamwork
As one of the non-medical members of the treatment team, it can be difficult to weigh in on medical issues. There are many of us — psychologists, social workers, rehab therapists, clergy, recreation staff, aides, family members and the residents themselves —and we understandably defer medical decisions to our physician and nurse colleagues.
As most of us in LTC have seen, however, it can be very difficult to stop the medical treatment “train” once it leaves the station. An important part of our role as team members, therefore, is to assess whether or not the treatment is benefitting our residents and if it’s what they and their families desire.
We can all have a voice in that.
Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide, is a 2014 Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is the Gold Medalist in the Blog-How To/Tips/Service category of the 2014 American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with nearly 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.