'A Showstopper' of a Question
Last spring, I received a call from my friend Susan, who was standing in the corridor of a New York City hospital. Her 90-year-old mother, who was critically ill with cancer and had suffered a fall, was about to be discharged from the hospital.
The question that the doctors and social workers were asking was: Where should Susan's mother go upon her discharge? Susan and her sister were given a list of rehabilitation facilities and nursing homes, and were left to make a decision.
"Since my mother had a lovely private room at an assisted-living facility, which was prepared to set up hospice, this made no sense to us," Susan says. While she and her sister thought hospice was right for their mother, they did not know how to begin the conversation with doctors and social workers, who seemed to be advocating another course of treatment.
Knowing that I work with patients confronting similar choices every day, at the nation's largest not-for-profit home health care organization, The Visiting Nurse Service of New York (VNSNY), Susan turned to me for advice. I asked her a question that I believe should begin every discussion about health care options, especially for elders: What is the goal of treatment?
The question proved to be a revelation for Susan. She and her sister discussed goals: They wanted their mother to be comfortable in her final days and surrounded by familiar faces. "The employees of her assisted living facility were not only warm people but also adored my mother, who was a live wire," recalls Susan.
Once they articulated their goals, the course of treatment became clear. "When my sister and I told the social workers and doctors that we did not see a practical goal in rehabilitation or a nursing home, there was no argument. 'What is the goal?' reframed the discussion."
I asked the same question of my father several years ago when he was recovering from a stroke. He wanted to be able to walk his golden retriever, and that goal was the blueprint for his post-stroke rehabilitation. (Stay tuned for a post next month on "Rethinking Rehab.")
I oversee VNSNY's programs in Behavioral Health, Children and Family Services, Long Term Home Health Care, and Rehabilitation Services, among others, and am often confronted with questions of how best to provide care for seniors being discharged from the hospital.
We recently had a 78-year-old client, Judith, a non-adherent diabetic who barely left her Bronx apartment -- except for regular visits to the emergency room. Upon her latest discharge, the health care team in our Transitional Care Collaborative began the discussion about treatment by asking her her goals. She articulated a series of small, attainable goals, beginning with walking her apartment's hallway and culminating three months later in walking to the nearby Duane Reade. Her next goal: walking around the mall. "It may not seem important," she says, "but to me it's a big deal." As a result, she has been more compliant with her care.
As health care and the health care system grow increasingly--and sometimes frustratingly--complex, we are often faced with a welter of options for treatment and care that are, essentially, equally valid in the abstract. It is only when we overlay on these options our own health care goals that the most appropriate personalized course of treatment becomes clear.
This is acutely important as we age, or as we become responsible for loved ones who are aging. Whenever I discuss elder independence, the first question I ask is: How do you define independence (whether for yourself or for an aging parent)?
The answer, which essentially considers quality of life, varies from person to person. As the Merck Manual of Geriatrics notes: "Quality of life is an intensely personal and variable concept. Many elderly people report a high quality of life despite changes in their circumstances and their losses."
For those with some level of dementia, topping the list of goals may well be remaining in a familiar setting. It brings a measure of comfort to the soul, but also to the body. The body may remember how many steps it is from bedroom to bathroom, even when the mind no longer does.
Take time to enumerate these goals before you need to make a decision. It is considerably more difficult to do so in a busy hospital corridor, or in the midst of illness or injury when you are in pain, feeling vulnerable, and having trouble concentrating.
You can use personal goals as a blueprint for all aspects of health care. If you are given several treatment options for allergies, for example, determine your own goals. Maybe you're thinking: My allergies keep me up all night, and I can't function the next day. I need something that will help me sleep. Or maybe: I need to be my best at work, so I need treatment that will not make me drowsy.
"I have often thought about this question of goals and how handy it is," Susan said to me recently, almost a year after our initial conversation, "whether dealing with a medical situation or as a caregiver speaking for someone else. It may sound like a simple question, but it is a showstopper and it forces clarity on a situation."
Tips for Developing Personal Health Care Goals
- Identify small, achievable goals. As an obese diabetic with hypertension, Judith started with the goal of being able to walk 30 steps. As my colleague Gail Silver, Vice President of VNSNY's Long Term Home Health Care Program, says, "Small wins are oh so important."