The day Senator Ted Kennedy announced that he had a malignant brain tumor, I was at a briefing where my colleague and friend, Dr. Joanne Lynn, talked about what we need to do to improve care for people nearing the end of life. Lynn, a geriatrician, researcher, and advocate for better end-of-life care, has been talking about this for more than a decade now, ever since her SUPPORT study demonstrated scientifically what most of us knew intuitively: Dying in a hospital from any sort of disease was a lonely, painful, frightening journey.
It still is.
Despite the best efforts of hundreds of programs around the country to make the journey to death less terrifying, circumstances have changed little. Perhaps now that one American icon finds himself facing the threat of death in a very public setting, we will pay a little more attention and finally learn what policies need to be put in place to make the health care system care better for people who find themselves near the end of life. In fact, the issue is so crucial that this summer, The British Medical Journal (BMJ) named palliative care (treatment that concentrates on preventing and relieving suffering and improving quality of life for people facing serious, chronic or complex illnesses) as the number one area in which doctors can take steps to improve the quality of care.
One of Dr. Lynn’s strategies is to exhort people to start telling real stories about how real people die, and to use those stories to change the popular images that we will all somehow die on the set of “Love Story.” In our society, we don’t generally see elderly people as they near the end of life. Their stories don’t unfold on YouTube or in theaters. Those stories rarely feature an old man like Kennedy learning that he may well have a fatal disease and then just living with it, dealing with his sorrow and anxiety, but also just going on with life – sailing with his family or playing with his dogs.
In part, we don’t tell many stories like these stories because we are so new at living them. At the turn of the 20th century, most of us now living would have been dead already, victims of work-related accidents and childbirth. Indeed, most of us would not have survived childhood.
Today, that story is radically changed. Most of us will live to old age, only to learn at some point that we are living with a disease that will eventually kill us. Odds are that it will not be something rare, like a lethal brain tumor, but an ordinary and still lethal something – cancer, heart disease, or dementia and frailty. Very few of us will get to die in our sleep, to go quickly and quietly. Instead, we will linger. We will gasp for breath, twist in pain, recoil at pressure ulcers, and wonder who to call in the middle of the night when we are afraid and uncertain. We may first have these experiences while caring for aged relatives and friends, but ultimately we may live through them ourselves.
Dr. Lynn, in her paper Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age, calls this the trajectory of dying. This trajectory can take on a number of forms. For some of us, mostly when we are in our 60s, cancer will be the curtain call. For others, a few years on, heart disease. And for those of us who survive into our 80s and even 90s, dementia or frailty will be our end.
Depending on the illness – the trajectory – we will need different kinds of care. Those whose cancer can be treated will want top-notch medical interventions, clinical trials, and state-of-the-art treatment, sometimes aimed at stopping the cancer, often aimed at preventing pain and suffering. Or when the cancer cannot be halted, when the prognosis remains grim, we will want palliative care – which may not cure the cancer but can prevent pain and suffering. We will require intense medical treatment and, when that no longer works, we and our families are likely to turn to hospice to provide comfort and support.
Patients who have heart disease will want something altogether different. When the disease “flares,” or when symptoms, like shortness of breath, become overwhelming or unbearable, we will want hospital stays, ventilator trials, intense intervention to halt worsening symptoms. We will want to do this time and again, each time praying to be saved or spared. Eventually, of course, we will not be and we will die. And despite having lived for years with a fatal illness, our families will be surprised when death finally comes.
And for those on the third trajectory, old age, the journey to the end will be long and slow. Our conditions will slowly worsen, but there will not be much that the medical world can do for us. Instead, our families will really want help with the care giving burdens of day-to-day life, such as finding someone to take care of and elderly parent during the day when they can no longer be left alone or guidance on how to help someone back to bed in the middle of the night.
The trouble is that in our current health care system, much of the care so many of us need is unavailable or unreliable. A system designed to cure illness and to fight till the last breath is not, in fact, a system that makes it easy to die surrounded by family, free of pain and other debilitating systems, confident that our families will not be bankrupted by the financial, emotional, or physical costs of care. It is easy enough to get, say, an outrageously expensive implantable defibrillator. But good luck on the small things: trying to get a bedpan for your aging mother one night or locating a nursing home staff person who can manage a pressure sore.
The problem is, we fund the big things, but on the “small” issues, the ones that matter so much, we leave people to their own devices. End-of-life care is the only realm of health care in which we count on luck, not professional expertise, to see us through. In Dr. Lynn’s book, Sick to Death, she outlines public policy strategies and changes that are essential to creating a better system. She calls on us to create a system that funds the “small” things (for instance, continuity of care from nursing home to hospital) and that penalizes those who fail to provide them (who forget, for instance, to send a patient’s advance directive from one care setting to another).
There is no stopping death – but knowing how it will come can give a family a chance to celebrate the time that remains. Families can gather and show their love for one another. They can care for each other. They can tell jokes, go sailing, take a walk, finish a woodworking project, or even (if you are Kennedy) a piece of legislation. They can still laugh, even if their hearts are breaking, because to live well until the end is what so many of us want to do. They can do these things, but it would be much easier in a health care system that supported them in their final days.
In the public telling of this part of his story, perhaps Senator Kennedy can open a chapter in which we learn to talk about our own stories. We need to begin to address what it means to live with a likely-fatal illness, and about what we truly want from our health care system. Until we do this and address all the aspects of care, we will never be able to focus on a desired outcome: reliably good care at the end of life.
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