“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. … Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same:
What is your understanding of the situation and its potential outcomes?
What are your fears and what are your hopes?
What are the trade-offs you are willing to make and not willing to make?
And what is the course of action that best serves this understanding?”
Dr Atul Gawande explores his growing awareness of how best to treat patients and their families at life’s end. He challenges the fairly widespread belief that rigorous treatment in the face of all odds is the best way to proceed. He talks about coming to learn that terminally ill patients deserve careful listening, and he describes some of the cases in which he took risks to engage everyone in discussing the patients’ final days. He encourages medical providers, patients and their families to have the hard conversations, as he eventually had with his own father during the dying process. He came to feel that as people sort through what is most important to them and make personal decisions about how to live at the end of their lives, it gives everyone involved a kind of permission to relax.
My own reaction to thinking about dying or being with a dying loved one includes heightened tension and some fear. Of course, I’d like to believe I am free of such mundane feelings, as in, above all that. But I am much closer to experiencing the decline of vitality that comes with serious illness now. It might not come for a good long while, but I have received notice. Anxiety and fear can really destroy relationships to oneself and to others, and the last place I would want those feelings working their dark magic would be during the process of dying. Gawande’s thoughts were calming to me, as are the words of others who promote consciousness, connection and choice.
There is a web site known for serving as a clearinghouse for end of life care issues. It’s called GrowthHouse.org, Improving Care for the Dying. I dove into their content and found a great range of information, from nursing skills to decision trees to key components of establishing a humane environment in the household. They have the details of what dying can look like, and anecdotes about peoples’ experiences as family, professionals and patients.. One resource I liked was Improving Care for the Dying, by Lynn and Harrold. Its listed right in the sidebar of the website’s homepage. Section 1.0 is called Living with Serious Illness, and has easy to grasp lists and questions for those in any of the roles involved. Its a very rich sample of what Growth House is about.
Hospice has been a community resource for two decades now, but has remained a mystery for me despite reading and hearing about their work. Gawande shares some research on the tendencies of the dying to postpone participation in Hospice until the last three weeks of life, and often the last three days. He encourages, as does the Hospice organization, early contact with their offices for anyone with a terminal condition. Hospice admits patients for the estimated last six months of life, but Palliative Care providers will accept patients at most any point. Cancer patients in stage IV are encouraged to form working relationships with local providers in advance of becoming critically ill, because their care can be tailored to their preferences more thoroughly. I like the idea of broadening a care team as the disease progresses, as that can increase support for both a patient and their family network. My experience with having metastatic cancer for the last 15 months tells me how deeply one’s family, friends and neighbors are involved with the disease, and how much all parties concerned need infusions of warmth, hope, knowledge and support along the way.