Sunday, November 22, 2009
To live and die on your own terms
From the RoundTable blog
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Don H. Bivins, M.D.
Bivins is medical director of the Good Samaritan Hospice. He is also an associate professor of neurosciences at the Virginia College of Osteopathic Medicine.
Just a few months ago, President Obama addressed our nation and a joint session of Congress on his ideas for health care reform; tens of thousands of people marched on Washington to voice their concern regarding the health care reform legislation; and three Roanoke physicians and one Roanoke insurance executive had op-eds printed in The Roanoke Times regarding the anticipated legislation.
More recently, both houses of Congress have released versions of bills to overhaul our nation's health care system. Buried in the hundreds of pages of the congressional bills, but mentioned vocally in many public circles, were comments about end-of-life measures and counseling.
It seems appropriate, then, to address end-of-life concepts. Clarity and frankness are needed in what has become a boisterous, national shouting match.
What best defines "end of life"? Is it just a matter of "dying with dignity"? Is it only the mandate that a physician must discuss signing a Do Not Resuscitate order with a patient?
The end-of-life concept is often misconstrued to be just that last day or so of an individual's struggle before succumbing to a disease. Instead, I believe conversations about the end of someone's life should begin months or even years before death is imminent.
We should address the living that is to be done before dying begins. No health care provider can accurately predict when patients will die, but studies on disease trajectories allow the provider to estimate death's occurrence. As the patient moves along the trajectory for their disease(s), the provider's prediction gains accuracy.
With this information, the patient can design his living to be as meaningful as he desires. "I want to finish making the quilt for Amber and another for Emma. You know how they like the quilts on their bed!" "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!" "Honey, I never did settle that argument with Tom. We used to be such good friends. Please call him and ask him to come over. He can sit here beside the bed while we talk."
The national debate on end-of-life has focused on the patient alone. But where are the spouse, the children and grandchildren, and the siblings in our discourse? 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 the prospect of all the responsibilities that will fall on him.
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 and record Dad tell his old hunting stories one more time; a gathering of all the women and girls to record all of Grandma's recipes that she has kept in her head over the decades; Mom and Dad gathered around Shannon's bedside to laugh at the pictures of favorite vacations.
Also, life is enriched and expanded when the family discusses the dying. This tender conversation may go on for days or weeks. Frankly chatting about comfort measures, respirators, feeding tubes, who does the bathing, who will move into the home, which hospice to use, should be achieved long before death is imminent. These topics are too personal and meaningful to delay them "until we have to make a decision."
The conversations to be eligible for reimbursement in the proposed national legislation were to address the difficult topics of resuscitation and heroic measures. These are reasonable conversations to undertake, guided by the health care provider, the pastor, or trusted friends and counselors.
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 institution to another. Making the definitive statement of "I do not want a feeding tube once I am unable to swallow my medicines" has the specificity needed for the health care providers to fulfill our wishes. Being specific also prevents the arguments that might occur between family members at the bedside of the dying loved one. Once such decisions are concluded, they can be entered into the living will, and the medical power of attorney can be fully informed of the patient's desires.
It is unfortunate that many health care providers are reluctant to address end-of-life issues. The American system of medical education is strongly tilted toward 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 country's medical schools do not teach the medical students how to help someone live meaningfully while waiting for death, although patients and families tell us they often are relieved when the physician initiates and guides them through these conversations. Do not hesitate to initiate the conversation and to be gentle but frank in your comments.
Nevertheless, sometimes you may need other resources to completely address end-of-life topics. Hospices and palliative care teams are great resources for books or personal interactions. I urge you to interact with the local hospices and seek their assistance. Helpful books include "Dying Well: Peace and Possibilities at the End of Life," by Ira Byock, M.D.; "Talking About Death Won't Kill You," by Virginia Morris; and the classic "On Death and Dying," by Elisabeth Kubler-Ross, M.D.
The terms palliative care and hospice care are often used interchangeably. However, they represent different phases of care along the disease trajectory.
Let's imagine, for example, that your aunt with diabetes and angina was just informed that she has breast cancer. Surgery is recommended, followed by radiation and 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 the 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 end-of-life concerns, and assisting with any post-discharge disposition issues.
Once the cancer has spread and active cancer treatment is no longer recommended, the hospice care 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.
Many people have been frightened by the end-of-life mandates in the health reform legislation. Nevertheless, end-of-life concepts should be part of a family's conversation, because the living before the dying is so important for us all. That importance is underscored by two bills before the Senate now.
Sen. Rockefeller of West Virginia and Virginia's Sen. Mark Warner have introduced two bills that will impact end-of-life education for medical professionals and the lay public, and will improve support and increase responsibilities for hospice programs. I strongly urge you to contact their offices at www.senate.gov and offer your support of both bills.
We need not fear the end of living. Our living should be joyful, comfortable and impactful -- even if death is no longer far in the distance.
