March 23, 2017
(++++) ENDING WITH DIGNITY
Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers. By Steven Z. Pantilat, M.D. Da Capo. $16.99.
As awful as it is to be diagnosed with a life-threatening disease, it can be almost equally awful to try to negotiate the morass of medical, legal and personal/family issues that follow such a diagnosis – while attempting to make what are literally life-or-death decisions about treatment. Steven Z. Pantilat’s Life after the Diagnosis is difficult, at times unpleasant reading, but it is so clear-headed and understanding (and understandable) that it can be an invaluable guide for individuals facing a horrendous diagnosis, family members trying to help, and caregivers trying to figure out the best way to deal with rapidly approaching end-of-life necessities.
Pantilat’s writing is clear, easy to understand, and filled with the warmth and caring that are so often absent in modern medicine. As usual in books for lay people about serious medical matters, Life after the Diagnosis is packed with examples taken from the experiences of patients Pantilat has treated – but unlike many such books, this one uses the experiences to highlight real-world issues that readers may very well encounter, and helps in the discovery of the right questions to ask and the sorts of answers that one may expect to get. Indeed, Pantilat’s combination of the frank and honest with the compassionate is what doctors treating patients near life’s end should seek as an ideal.
There is detailed advice here on accepting and living with a fatal disease, plus information on how to prepare for the disease’s later stages and how to help loved ones prepare as well. In particular, Pantilat is a strong advocate of palliative care, which he explains with the same clarity that he brings to other topics. “In trying to eradicate an illness, traditional treatments often do more harm than good, especially late in an illness. Palliative care, which is given along with standard medical treatments, provides an extra layer of support that helps patients function better, be more comfortable, and experience less pain and stress. …It reflects the realization that serious illness involves numerous factors, including pain, stress, emotions, spiritual beliefs, culture, finances, nature, and values. Palliative care focuses on the whole person…” Indeed, it is through the lens of whole-person focus that Pantilat discusses pretty much everything in Life after the Diagnosis. His approach shows the difference between treating a disease and treating a person who has a disease – which are two very different things.
Take, for instance, Pantilat’s treatment of hope. He says he tries to find out from his own patients what their hopes are for the rest of their lives – and then find ways to make those hopes come true, within the limited time people have available. For example, he tells of two patients who wanted to live until their children could be married – with neither patient likely to be alive that long. And he shows how the situations were handled: one with an elaborate-as-possible wedding within the intensive care unit of a hospital, the other by moving the wedding much earlier than originally planned. These stories illuminate Pantilat’s trenchant observation, “Often, both doctors and patients misplace their energies. They continue to concentrate on survival and ignore other goals that could still be attained.”
Pantilat is direct even when saying things that patients, families and caregivers will likely not want to hear. The hope about which he writes is directed hope, practical hope, not pie-in-the-sky hope for something that is vanishingly unlikely to occur. “When you’re seriously ill, it’s natural to hope for a cure, but a cure may not be possible. If you focus all your time and energy on being cured, it can keep you from taking care of other important business, making crucial decisions, and accomplishing achievable goals. …The pursuit of a cure can undermine the very reason you want a cure: to have more time with loved ones. In the end, you lose out on both.”
Life after the Diagnosis is a book that no one will want to need to read; if there is any doubt, just consider that one chapter is called “The News Goes from Bad to Worse,” and it is scarcely the only chapter in which the material discussed is difficult to bear. Consider as well a passing comment such as, “Doctors usually have more information than they share.” This seems obvious when you are healthy – but it can become deeply ominous in the context of a serious illness, as patients understandably wonder, “What is my doctor not telling me? Can I even trust what I hear?” And then there is the issue of medical jargon, which doctors routinely use and may be more likely to employ as a kind of self-protective mechanism when talking to patients with serious diseases. Pantilat is typically blunt in noting, for example, that “the word positive usually means ‘good’” but that “in medicine, positive is often bad,” and also that when a doctor talks about progress or says something is progressive, patients must ask whether things are getting better or worse. Language can feel like a mine field, one among many, when you have a serious illness or a loved one does; it is just one topic through which Pantilat leads readers skillfully.
The final part of the book explains palliative care in detail and also discusses hospice care (which is not quite the same thing) as well as “Difficult Treatment Decisions and Discussions” (another chapter title). This section may be especially difficult reading. But it provides some of the most valuable practical advice in the book. Pantilat is amazingly clear-headed about end-of-life care, saying that although families often try to protect loved ones from knowing they are dying, patients themselves “know that they’re getting weaker. Patients hear the hushed tones outside their rooms. Everyone treats them too nicely. Family and friends cry when talking to them, and visitors suddenly arrive from the four corners of the earth. Your loved ones don’t cross borders for pneumonia, but they cross the ocean if you are dying from lung cancer.” The plainspoken, knowledgeable comments and advice here are often hard to take, especially if you come to this book only because you or someone you care for has been diagnosed with a serious and probably terminal illness. But at a time of life – the time of its anticipated ending – when there are precious few practical, real-world guides to what to expect, Life after the Diagnosis can be and will be invaluable. Pantilat’s words may be unwanted in the abstract, but in the concrete, practical reality of extremely serious illness, they are very much needed and will be deeply appreciated.