I think it would be safe to say that most of us have trouble facing our own mortality. The idea that tomorrow isn’t promised fails to get many of us to actually live that way (I know I’m guilty).
Longer term and more connected to the John A. Hartford Foundation’s work, we don’t like to think of ourselves as “old”—let alone dying—and we don’t plan well for futures that will likely include the need for long-term care or services later in life.
Our health care system and policies reflect this short sightedness, as well. That’s why it’s been refreshing to see some provocative writing about these issues over the past few weeks that might help us all think and do more to live our final years in old age the way we would want.
Last week, we wrote about the new Institute of Medicine report, Dying in America, that calls on the health care sector to improve the quality and availability of medical and social services for patients and their families at the end of life. Chris Langston noted a particularly troubling story within the report about a dying 98-year old man receiving unwanted and unnecessary care that underscores the need to face the facts of how broken and harmful the current system can be.
An unfortunately similar and even more horrifying story appeared in last week’s New York Times. In Fighting to Honor a Father’s Last Wish: To Die at Home, you can see how our fragmented system seems utterly intent on thwarting the wishes of a 91-year-old man and his daughter for him to die with dignity and peace in the setting of his choice. Instead, the suffering and turmoil of bouncing in and out of hospitals and nursing homes, unable to get needed home care services, results in a tragic amount of suffering. And the cost for this “care” that was totally unsuitable and unwanted in the last year of this man’s life: over $1 million.
Stepping back from the very end point of life and our health care system’s lack of preparedness, another article that challenges people to think about their later years has created quite a buzz. Everywhere I’ve been lately, people have been talking about Ezekiel Emanuel’s piece in The Atlantic, Why I Hope to Die at 75.
Coming from an influential health policy expert, the piece is certainly controversial and unfortunately (in my opinion) too readily lends itself to a resurgence of the utterly insane argument that the government will eventually institute “death panels” to ration care. There are many facets of the article that could be dissected and debated, which I won’t go into, but I do appreciate that it has prompted discussion among people about their own wishes and goals as they age. This includes some very important considerations about potentially inappropriate health care services for older adults.
For another good discussion about this issue of potential overtreatment and living our last years the way we want, read the recent New York Times Sunday Review Op-ed, Too Young to Die, Too Old to Worry. It comes from Jason Karlawish, a colleague of Emanuel’s in the Department of Medical Ethics and Health Policy at the University of Pennsylvania and a Beeson Scholar.
Karlawish riffs off singer-songwriter Leonard Cohen’s announced decision to start smoking again at age 80 and raises good points about the decisions we should grapple with as we get older. Does a 75-year old who doesn’t have heart disease really need to be on statins, when the chances of getting heart disease or reaping the benefits of preventing it will likely not be seen in the remainder of that person’s life?
Given reasonable information about benefits and risks, you can make more informed decisions about how much time you really want to spend visiting doctors’ offices, getting scans, and sorting out pills when you are 85 or 90.
Karlawish points to a tool called ePrognosis, which is available for clinicians to use in thinking about these decisions and the conversations they should have with their older patients. The tool was developed by other Beeson Scholars and I’m looking forward to seeing many of these outstanding researchers who are focused on the older population at their annual meeting this month.
Some other tools on a variety of aspects of decision-making about care at the end of life are listed below.
We desperately need a real public conversation about aging and how we want to live and die. An engaged public is essential to empowering more individuals to make their own decisions and put plans in place to ensure their wishes are respected.
And we need changes in the health care system so that it serves us better at all stages of life.
Other tools include:
- PREPARE, developed by Rebecca Sudore at UCSF, is an extremely easy-to-use online resource for people to have informed conversations with clinicians about advanced directives.
- The Conversation Project is helping families and whole communities discuss their wishes for end-of-life care.
- In a broader way, the Patient and Family Engagement Roadmap, recently released with support from the Gordon and Betty Moore Foundation helps patients, clinicians, health systems leaders, and policy makers take action to enable people to be more engaged in their own health care, including at the end of life.
- The Institute of Medicine report, Dying in America, serves as a tool itself with useful information such as this outline of the core components of quality end-of-life care, as well as its emphasis on palliative care as a key to meeting patients’ goals, at the end of life or at any point during serious illness.