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Efforts to raise awareness of palliative care are often seen as a global enterprise, one that should only be undertaken by large organizations with Donald Trump-size coffers. But in truth, it is individual hospices that shoulder the burden of educating physicians about the benefits of palliative care.
From primary care to oncology, these physicians play a pivotal role in influencing patient attitudes toward hospice and palliative care. It is thus incumbent upon physicians to initiate a dialogue with each patient and his or her family about hospice and palliative care when it is appropriate. The problem is that physicians are either reluctant to do so or are not well-informed enough to speak confidently about it.
Hospice medical directors play a pivotal role in familiarizing physicians with end-of-life care, says Charles F. von Gunten, MD, PhD, FACP, chairman of the American Board of Hospice and Palliative Medicine and medical director for the Center for Palliative Studies at San Diego Hospice.
According to von Gunten, medical directors can advance the cause of palliative care and hospice by displaying professionalism and leading by example. "When a hospice medical director is seen as an expert, it’s a potent marketing tool," says von Gunten.
In the absence of end-of-life training in medical schools, hospice medical directors must fill in the information void for their colleagues. That can be done through one-on-one consultation with referring physicians who seek advice regarding difficult cases.
"The majority of physicians learn from direct patient care," says von Gunten. "Medical directors can help other physicians learn through consultation."
Through this relationship, von Gunten says, hospice medical directors can show physicians how to use palliative care in their own practices and how it helps improve patient care. As physicians become more comfortable with palliative care and hospice care and more knowledgeable about them, recommending these modalities will come as a matter of course.
Consultation is the best model for passing along palliative care information, says Martha L. Twaddle, MD, FACP, medical director for the Hospice of the North Shore and the vice president of medical affairs for its sister organization, the Palliative Care Center of the North Shore, both in Chicago.
With most physicians uncomfortable about discussing palliative care with their patients, hospices must encourage physicians to consult hospice medical directors. The consultation fosters a team atmosphere between the patient family and involved physicians.
Unfortunately, it’s not often that physicians seek the advice of medical directors, and medical directors haven’t made physician outreach a priority. In the few cases in which physicians seek consultation with a hospice medical director, it most likely is because the medical director has a reputation as an expert in palliative care. Getting to that point, however, is a combination of trust and experience. Trust is fostered over time, and experience must be proven.
Because of the lack of formal medical school training in palliative care, hospice medical directors must prove that they are experienced clinicians in caring for chronically ill and dying patients, and they must convince physicians that palliative care is a specialty.
"Hospice administrators must understand that palliative care is developing into a specialty and that they need to promote their medical directors as leaders in this specialty," says Dale Ellen Lupu, PhD, president and chief executive officer of the Silver Spring, MD-based American Board of Hospice and Palliative Medicine (ABHPM), which certifies physicians in palliative care.
Lupu says certification in palliative care medicine goes a long way toward proving a physician’s expertise and lends legitimacy to the fledgling specialty. To date, ABHPM has certified nearly 1,000 physicians, but Lupu says with more that 2,200 hospices around the country, there is a long way to go to get all hospice medical directors on board.
Another project that is attempting to increase palliative care awareness is Education for Physicians on End of Life Care (EPEC) in Chicago, which seeks to train physicians to teach other physicians about end-of-life care. EPEC officials have stressed that hospice medical directors are prime candidates for this train-the-trainer approach.
Dissemination of the EPEC curriculum began with two national conferences in the spring of 1998 to introduce an abbreviated version of the curriculum to national leaders in medicine. In the first half of 1999, six regional conferences presented the EPEC to a select group of 500 physician educators for implementation in their own institutions or communities. Since then, more than 1,000 physicians have been trained to teach their colleagues, says Jeanne Martinez, RN, MPH, CHPN, associate director for outreach and technical assistance with EPEC in Chicago.
Trained physicians are taught fundamental skills in communication, decision-making, medical ethics, legal issues surrounding palliative care, palliative medicine and hospice care, psychosocial management, and pain and symptom management, which applies to both terminal and non-terminal conditions. While hospice medical directors may be well-versed in these areas, the course also instructs physicians on teaching approaches.
Upon completion of the program, participants are able to:
In addition to instructing other physicians, hospice medical directors should help EPEC-trained physicians reach out to the rest of the health care industry.
Once physicians are under the guidance of hospice medical directors, it is much easier to help them become more aware of palliative care and more comfortable talking about the subject with their patients. According to a paper published in the May 1999 issue of the Annals of Internal Medicine, physicians need to be taught how to:
As if the challenges facing physicians in reaching these goals aren’t enough, they also face greater challenges once they are able to effectively achieve their communication goals. According to the paper’s authors, entering this level of relationship with a patient can increase the patient’s short-term suffering. However, raising painful emotions can lessen a patient’s aloneness and provide new opportunities for comfort, growth, and resolution.
Physicians must be reminded to clarify their own roles and expectations and to call on their colleagues among physicians, nurses, and other disciplines for assistance, the paper says.
"Interviewing techniques, such as asking open-ended questions about end-of-life issues, building on and exploring patient responses, and addressing the associated emotions can help initiate difficult discussions about palliative care," the authors write.
The paper offers practical advice on how physicians can better handle what promises to be a difficult conversation. Specifically, the authors point out that:
Educating physicians on this point will primarily focus on skills they already have. Using open-ended questions during clinical encounters is a skill that physicians have honed since medical school. But when it comes to prompting discussions about palliative care, physicians are often reluctant to engage their patients about hospice or palliative care, fearing the topic would cause the patient to lose hope.
Consequently, if a physician shrinks from discussing palliative care because a patient has expressed fear regarding life-threatening illnesses, the patient’s emotional and spiritual needs will likely be left untreated.
Hospice medical directors must remind physicians to use open-ended questions to gauge the patient’s concerns about his or her illness. The patient’s own language should dictate the direction of the questions.
— Examples of open-ended questions include:
— What concerns you most about your illness?
— How is treatment going for you and/or your family?
— As you think about your illness, what is the best and the worst that might happen?
— What has been most difficult about your illness?
— What are your hopes and expectations of the future?
— As you think about the future, what matters to you most?
Once the patient has begun to discuss his or her concerns and emotions, physicians need to be taught not to begin discussing clinical options before the discussion of palliative care. For example, the discussion may lead to a decision to draw up a do-not-resuscitate order. If, however, specific treatment management options are discussed before palliative care, it could deter the patient from deciding whether to limit life-prolonging intervention.
One objection to the approach of using open-ended questions is that it can be seen as a distancing technique on the part of the physician and that, in certain segments of our multicultural society, patients and families may object to the discussion of death at this level. If, however, the physician focuses on using patients’ own words, allowing patients’ concerns to drive the discussion, and respecting patients’ values, the objection is addressed.
In addition to the patient’s concerns and emotions, family members often raise issues of their own. Physicians will hesitate to discuss palliative care with family members because their concerns — such as being able to handle care of the patient during the final stages of death — may not be solvable. But physicians must be reminded that getting to the heart of a family’s fears and concerns is essential if the physician expects to meet the needs of the patient.
Patients and family may never have heard about palliative care. Physicians’ basic knowledge of palliative care should be shared with patients and family by providing definitions of terms such as "pain management."
Physicians should review common problems that dying patients face, such as pain, fatigue, and shortness of breath. Quantify the pain felt by patients by using a numeric scale. Also, don’t overlook depression, and remind physicians that they should screen for the disorder.
While physicians may feel uncomfortable with spiritual matters, hospice medical directors must point out that many patients desire a physician who is spiritually attuned to them. The following series of open-ended questions will help physicians gain a better understanding of their patients’ spiritual needs:
— Is faith important to you in this illness?
— Has faith been important to you at other times in your life?
— Do you have someone to talk with about religious matters?
— Would you like to explore religious matters with someone?
Developing closer relationships with end-of-life patients may result in patients directing difficult statements and questions toward physicians. For example, a patient with only a few weeks to live may express a desire to attend an event he or she will likely not live long enough to see. Physicians can be trained to handle these difficult situations by keeping these three points in mind:
Medical directors should see themselves not only as experts in end-of-life care, but also as reformers who have the skill and opportunity to affect the behavior of their colleagues.
"What we are trying to do is undo the lack of education that has occurred in medical schools for generations," Lupu says.
1. Lo B, et al. Discussing palliative care with patients. Ann Intern Med 1999; 9:744-749.