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Why doctors should talk to patients about the end-of-life long before they get there

Posted by Karen M. Wyatt on February 23, 2012 at 8:00 AM

According to a new study by Dana-Farber Cancer Institute, discussions between cancer patients and their doctors about options for care at the end-of-life are not occurring until late in the course of the illness, when it is often too late to make well-thought-out decisions.

The article, which was published in the Annals of Internal Medicine, stresses that these conversations frequently take place when the patient is admitted to the hospital for acute care, a particularly stressful time for patients and their families. In addition, these end-of-life discussions often occur with a hospital physician, rather than the patient’s own treating physician.

These findings may help explain why more patients than ever are dying in hospices, but the overall cost of end-of-life care is not going down: because that care is often not initiated until the last week or two of life, limiting the benefits that can be received by the patient and family and negating the cost savings. In my opinion, all primary care physicians should be discussing the end-of-life with their older established patients, even those patients without a terminal diagnosis, in order to achieve the following:

1. Learn what the patient values. In all aspects of patient care it is extremely important for the physician to understand and appreciate the values of the patient, including cultural and religious traditions. When important decisions must be made in a crisis situation it is very helpful for the physician to have not only a record of the patient’s wishes and preferences, but also a sense of that person’s view of the world and life. For example, a patient from Mexico with spinal cancer needed to have surgery on her spine, however she and her husband had a great fear of the procedure because of a terrible incident that had occurred in their home village. It was necessary to be sensitive to their view of hospitals and surgeons in order to fully understand the issue and help them become comfortable with the surgery she needed.

2. Ease fears of death and dying. Everyone, regardless of diagnosis, deals with a certain amount of fear regarding death. To open the discussion early-on allows time for contemplation and education that can greatly reduce the terror that arises around this subject. There are many videos and books available now that can help patients face their fears and find a measure of comfort with the end-of-life conversation.

3. Offer education about available options. Most patients benefit from having the time to consider various options for care at the end-of-life, such as long-term care, palliative and hospice care. Having a discussion about these options before the decision is urgent allows time to visit facilities, talk with other providers and patients, and hear from family members.

4. Create an appropriate perspective for healthcare decisions. One complaint I have often heard from patients at the end-of-life is that they were not informed of the risks or likely outcome of treatment when they were at the beginning of their illness. These patients wished they had been more fully informed so that they could have made better decisions for their treatment and also for how they want to spend their last day of life.

5. Incorporate the end-of-life as an equally important stage of life. Too frequently in our society the subject of death and dying is avoided and pushed aside because we feel uncomfortable with the discussion. But dying is the final stage of life and should be recognized as a time when growth and development as a person is still possible, just as it is in all other stages of life. To ignore the importance of this time of life is to cheat ourselves of the opportunity to find meaning in our final days.

Our society definitely needs more information about end-of-life care in order to address the skyrocketing healthcare expenditures that are occurring during some patients’ final days. It is essential that the medical profession lead the way in initiating these discussions in order to maintain a sensible and objective approach to death and dying.

But doctors will have to come to terms with their own fears and discomfort regarding death before they can assume the appropriate leadership role. And that conversation must begin early-on in the training of young doctors so that they will be prepared for this issue when it arises in practice. Clearly there is still much work to be done on this subject.

Categories: End-of-Life, Death & Dying, Healthcare

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Copyright ©2010 Karen Wyatt, MD

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