The Concept of End-of-Life Care

By Don H. Bivins, MD

Medical Director, Good Samaritan Hospice
Associate Professor of Neurosciences, Virginia College of Osteopathic Medicine

The national debate on health care reform has focused attention on discussions with your doctor about medical care at the end of your life. The end-of-life concept is misconstrued to be just that last day or so of an individual’s struggle before succumbing to disease. Instead, I believe conversations about the end of someone’s life should begin months before death is imminent. We should address the living to be done before dying begins. The patient can design his living to be as meaningful as he desires. “I’ve always wanted to teach Caleb how to use a fly rod – now is the time to get it done, while I can still get the boat in the water. It would be a great hobby for him when he grows up!”

The national debate has focused on the patient alone. But where are the spouse, the children and grandchildren, and the siblings? Often the one with the greatest fear of death is not the patient. Daddy’s little girl may be horrified at the prospect of not hearing his booming voice again. The spouse of 50 or more years may dread all the responsibilities that will fall on them. The span of living before the dying is a great time to ‘catch the memories’ of a life well lived: a family reunion to hear Dad tell his old hunting stories one more time, or a gathering of all the women and girls to record Grandma’s recipes that she kept in her head over the decades. Life is enriched when the family discusses the dying. Frankly chatting about comfort measures, respirators, feeding tubes, and who will move into the home should be completed before death is imminent. These topics are too personal and meaningful to delay them “until we have to make a decision”.

The conversations mandated in the proposed legislation were to address the difficult topics of ‘heroic measures’. These are reasonable conversations to undertake, guided by the health care provider, the pastor, or trusted friends. The conversations should address specific topics and conclude with specific instructions. The term ‘heroic measures’ has vastly different meanings from one doctor to another or from one hospital to another. Making the definitive statement of “I do not want a feeding tube when I cannot swallow medicines” has the specificity needed for doctors to fulfill our wishes.

Many health care providers reluctantly address end-of-life issues. The American system of medical education is tilted towards the premise that any disease can and should be cured. Inability to cure implies that the health care provider is ignorant; death implies failure. Our medical schools do not teach students how to help someone live meaningfully while waiting for death, although patients and families tell us they are relieved when the physician initiates and guides them through these conversations.

Sometimes you need other resources to address end-of-life topics. Hospices and palliative care teams are resources for books or personal interactions. I urge you to interact with local hospices and seek their assistance. Helpful books include Dying Well: Peace and Possibilities at the End of Life by Ira Byock, M.D., or Talking About Death Won’t Kill You by Virginia Morris.

The terms palliative care and hospice care represent different phases of care along the disease trajectory. Let’s imagine that your aunt with diabetes was informed that she has breast cancer. Surgery is recommended, followed by chemotherapy. One might refer to this as the aggressive phase of cancer treatment. If this initial treatment is ineffective, or if initially effective yet the cancer recurs, a different protocol of chemotherapy may be advised. So your aunt is hospitalized for treatment, but her diabetes worsens and pneumonia occurs. At this point, a palliative care specialist may be consulted to look at the big picture of treating all the illnesses, involving the family in the aunt’s care, leading family meetings to discuss concerns, and assisting with post-discharge planning. Once the cancer has spread and active cancer treatment is no longer recommended, the hospice team steps in with the express purpose of assisting the aunt and her family to live life fully until death eventually arrives.

In the midst of turmoil and illness, hospice affirms the life. Living with dignity, comfort, and satisfaction is the goal of both palliative and hospice care.