Over the next decade I worked with Joanne Lynn, a physician whose pioneering work in end-of-life care led organizations around the country to push for change. We wrote books and articles; we worked with organizations nationwide, helping them to configure systems in which care at the end of life would include reliable symptom management, support for families, no surprises, customized care plans and continuity of care.
So I was even more disheartened than usual to hear the circumstances surrounding the death of a dear friend’s mother a few months ago, when she was enrolled in hospice care. She had cancer, and after conventional treatments failed to lead to remission, had decided to forgo further treatment.
On the Friday before what would prove to be her final weekend, she managed a swim at her community pool and enjoyed time together with her husband of nearly 60 years. By Saturday, she was struggling with shortness of breath and air hunger — a terrible and frightening sensation. She died gasping for air and begging her husband for help; she died with a hospice nurse asserting that it was not hospice’s philosophy to hasten death or prolong life.
I described this to Lachlan Forrow, director of ethics and palliative-care programs at Harvard’s Beth Israel Deaconess Medical Center, and he said bluntly, “In 2010, giving inadequate doses of morphine to a dying patient who then suffers unnecessarily should be considered malpractice.” And this was in hospice; I shudder to think how much preventable suffering takes place in other health-care settings.
Unnecessary suffering
My friend’s mother died needing what every dying patient needs and deserves: palliative care — the thorough assessment and treatment of symptoms, attention to the whole person and support for the entire journey we each will face at the end of life. My grandmother and my friend’s mother both needed more access, if only by phone, to round-the-clock health professionals who could respond to what was happening, and both women needed higher doses of opioids.
Ironically, a few weeks before my friend’s mother’s death, the New England Journal of Medicine published a study that found that patients with lung cancer who received palliative care lived almost three months longer than those who did not. In an accompanying editorial, geriatrician and palliative-care expert Diane E. Meier also noted that the palliative-care patients had a better quality of life and lower rates of depression.
