On Friday, January 11, 2013, the New York Times ran a wonderful story about a nurse who spent the last weeks of her life teaching student nurses about dying, answering their questions and letting them both observe and care for her until nine days before she died of pancreatic cancer. The article, which can be read at http://www.nytimes.com/2013/01/11/us/fatally-ill-and-making-herself-the-lesson.html?hpw, perfectly illustrates the human capacity to help others and also shows how the helping person also and inevitably helps him or herself as well. We found the nurse’s story particularly touching because one of our True Dignity board members once knew a woman who went to her church to make sandwiches for the poor on a Monday or Tuesday and died of pancreatic cancer on Thursday or Friday of the same week. The nurse, Martha Keochareon, fulfilled her wish to teach. Our board member’s friend fulfilled her wish to be of service. Both women, however, were actually teachers. They taught us how to live to the end and then die well.
True Dignity believes from personal experience that one of the ways a dying person teaches has nothing to do with being active until the end. One of Martha Keochareon’s main contributions to the student nurses’ education and growth was simply allowing them and others to help her. Several of our board members have taken care of dying relatives. It was exhausting and incredibly difficult, like taking care of a newborn. We needed all the support we got, and more than that. Our caregiving experiences, however, enriched our lives immensely. We are so thankful no one with a distorted sense of autonomy deprived us of them, and so thankful there were no assisted suicide laws exerting pressure on them to relieve us of the “burden”, actually a great gift, of being caregivers.
The article generated a lot of comments, most of them saying just what we have said above: that self giving to the end is an example for us all of how to die well and that caregiving is a privilege. Only a couple (literally) of commenters write that they would rather be dead than die naturally. One asks why we don’t euthanize people like dogs, whom he forgets to mention we put down not only when they are in pain but when they start to inconvenience us. The other says he plans to commit suicide before he can get very sick, since he won’t be able to get help committing suicide later.
Ms. Keochareon had to stop teaching nine days before she died, because, though she was receiving hospice care, her pain was not well-controlled. Several comments called for better palliative care. One of those was written by a person who identified herself as Diane Meier of New York City. If she is the person we think she is, she is Diane Meier MD, Director, Center to Advance Palliative Care, Vice Chair for Public Policy, Hertzberg Palliative Care Institute, Mount Sinai School of Medicine, and Professor of Geriatrics and Internal Medicine at Mount Sinai School of Medicine. Her comment, makes it clear that, contrary to the assertions of proponents of assisted suicide, the pain of end stage pancreatic cancer can be effectively treated. It also dispels the almost universally-held belief that being in hospice guarantees the best possible care and reminds us not to be deceived into thinking that the fact that most Oregon patients who commit suicide under the state’s law are in hospice at the time of their deaths means they are receiving good relief for physical or mental pain. Dr. Meier is blunt, writing, “even though the patient described in this article was on hospice, she had very poor pain management.” We have copied the comment in italics below. It includes a link for patients and families searching for the best possible palliative care.
Diane Meier, New York City: It is not only nurses who need much better training in the care of the seriously ill- incredibly, doctors also receive little or no education on pain management, communication with their patients and their families about what to expect and realistic care options. Even though the patient described in this article was on hospice, she had very poor pain management. Since every single one of us will face one or more serious illnesses during our lifetime, this training blindspot is inexplicable. We can – and must- do better. Palliative care teams have grown rapidly in the U.S. as one approach not only to improving patient care but also to provide teaching for nursing, medical, chaplain, and social work students.
What is palliative care? Palliative care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of nurses, MDs, and others who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment. Hospice is a form of palliative care which is limited to the care of the dying with a predictably short lifespan (of weeks to a few months).
For more info on how to find a palliative care team near you, see the directory at www.getpalliativecare.org.