Profession

Establishing a bond makes difficult discussions easier

A column that answers questions on ethical issues in medical practice

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA. Posted Feb. 7, 2005.

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How should physicians introduce organ donation and end-of-life discussions with their patients and/or their families?

Reply:

Knowing how to prepare patients for the end of life is one of the most important communication skills for a physician to have. It is a task all physicians should be able to do with confidence. Yet according to a survey of physicians and medical students published in the August 2004 issue of Academic Medicine, many of us are uncomfortable with the topic.

This survey also showed that medical students and residents received little education about end-of-life care, and many faculty feel unprepared to teach the topic. In recent years, experts in the fields of palliative and hospice medicine have devoted time and energy to developing helpful approaches to these discussions, and many medical schools, residencies and fellowships have incorporated these topics into the curriculum.

At Emory University School of Medicine in Atlanta, we have developed an approach to discussing end-of-life care that focuses on two key guidelines. The first is that communication techniques, such as listening and expressing empathy, are critical to establishing a bond with a patient so that difficult topics such as death and dying can be discussed openly. The second is that conversations about any specific intervention, such as surgery, code status or plans for hospice, should be made only after a discussion of the patient's overall goals for care.

Bringing up a topic such as change in code status might seem abrupt or awkward by itself, but by incorporating these two guidelines into the process, it could make the conversation better for the both the doctor and the patient.

In teaching medical students and residents, we divided the conversation into four basic steps: initiating the discussion; clarifying the prognosis; identifying goals of care; and developing a treatment plan.

As with any difficult topic, it is important to set up as appropriate an environment as possible. In addition to finding a private, quiet setting, ask the patient or family whom they would like to have present during the discussion. Introduce the topic of planning for the future and assure the patient that whatever course of treatment he or she chooses, there are always steps a physician can take to alleviate pain and suffering.

Then, clarify prognosis. Come prepared to the discussion, with any available data or the opinions of relevant consultants. One way to start is to ask the patient what he or she understands about the illness and its course, and then provide any additional information or discuss misunderstandings. Be upfront if the prognosis is poor. Even though such conversations are difficult, patients cannot make informed choices about end-of-life care if they are kept in the dark about the typical prognosis for their disease.

Next, talk in a general way about the goals of care. It can be helpful to ask the patient what he or she values most in their life at this time. It might be appropriate to ask how a patient want to spend his or her remaining time, if it is limited, or what would be perceived as a good death. Explore the patient's fears and concerns.

Based on the patient's own wishes and preferences, set general goals -- it could be useful to continue all aggressive medical care for the time being, but set a time to reassess the situation. Or it might be time to focus on comfort care only and consider hospice. Even when aggressive treatment is continued, palliative care -- care that focuses on the alleviation of pain and suffering -- is important.

Finally, once some general goals are established, talk about specific treatments. Some physicians might be uncomfortable making recommendations about these serious choices. But it is not only appropriate but also one of the duties of a caring physician to provide guidance to patients and families at the end of life. Such recommendations should remain consistent with the patient's own goals.

Occasionally, conflicts do arise in end-of-life discussions, but many can be avoided by taking the time to get to know the patient and establish goals of care together. Not only do such conversations foster better communication, they also can improve trust between the doctor and patient -- a key element of good decision-making.

Alexia Torke, MD, assistant professor of medicine, Emory University School of Medicine, Atlanta

William Branch, MD, director of the Division of General Medicine, Emory University School of Medicine, Atlanta

Reply:

Organ donation is often associated with catastrophic brain injury or illness resulting in brain death, after which physicians and transplantation coordinators from organ procurement organizations (OPOs) speak to families about the possibility of organ donation.

It goes almost without saying that these are perhaps the most difficult and sensitive circumstance to bring up the topic, since families are in the midst of grief and loss, and health care teams can feel as if they are adding to a family's emotional burden by making such a request. When the request for organs is made, however, on average, 40% to 50% of families give consent.

Factors that are known to positively influence families' decisions include separating discussions of brain death from those of organ donation (the decoupled model), families' perception of the time and privacy that they were given to make their decision, and their satisfaction with the care they and the patient received while in the hospital.

Recent work has shown that when a patient's wishes regarding organ donation are known at the time of his or her death, 90% or more of families give consent for donation. In addition, efforts by the United Network for Organ Sharing, the Health Resources and Services Administration Division of Transplantation, the Dept. of Health and Human Services' Advisory Committee on Organ Transplantation, and OPOs in collaboration with state legislatures have changed the framework for asking family permission to donate organs when the patient's wishes are known.

For many decades, the custom was to ask all families for permission to obtain organs for transplantation, even when the patient's wishes were indicated in a registry or advance directive. The Uniform Anatomical Gift Act does not require the consent of next of kin when the patient has expressed the intent to donate, stating, "An anatomical gift ... does not require the consent or concurrence of any person after the donor's death."

Many OPOs are now proceeding with organ procurement not by asking families' permission, but by informing the family that they are carrying out the patient's wishes, and that they and the health care team will provide support to the family through the process.

Considering that public opinion surveys regularly identify that most people support organ donation and transplantation, and that there are more than 87,000 people waiting for organ transplantation, it becomes obvious that the most important step physicians can take to increase organ donation is to discuss it with adult patients during routine visits and give them advice about how to register their intent to donate.

Physicians of all specialties can and should play an important role in discussing donation with patients, and no more than a few minutes is required to start the conversation.

As is the case with discussions of advance directives, patients or families initially might be apprehensive, might wonder why the topic is being brought up and could need time to consider organ donation over the course of several visits. The fact that the doctor has brought up the topic should not be taken to mean that the patient has a terminal illness, but rather that the patient should move from merely thinking about organ donation to actually taking action.

The art for physicians is not to push too hard if the patient isn't ready to have the conversation and not to miss the opportunity to talk to a patient who is ready to consider or act.

An example of how to begin the conversation is to ask patients if they know that they have the option of registering their desire to donate organs, and providing information on how they can do so. Physicians also should explain that:

  • Organ donation is an altruistic act, a way to help others.
  • It is easy to register one's intent to donate organs with the OPO or the driver's license bureau.
  • Organs are not removed for donation until after a person has been declared dead, and all efforts to save a person's life will have occurred beforehand.
  • Even though organ donation can occur without obtaining consent from their family, it is important to discuss with family members one's wish to donate.
  • Family will not incur additional medical bills if organ donation occurs, because donation-related expenses are paid by the OPO.
  • Donated organs are distributed to people on a waiting list that takes into account potential recipients' health status, time on the waiting list and proximity to the donor, among many other factors.

Brochures and materials to share with patients can be obtained by calling 800-355-SHARE (7427) or by visiting HHS's organ donation Web site (link).

Information regarding the process of registering in all 50 states is available at Coalition on Donation's Web site (link).

Michael Williams, MD, associate professor of neurology and neurosurgery, Johns Hopkins University School of Medicine, Baltimore; AMA delegate, the American Academy of Neurology; former chair of the Council on Scientific Affairs

Pam Lipsett, MD, professor of surgery, chair of the Organ Donor Council, John Hopkins Medical Institutions, Baltimore

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA.

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