July 2008 | Back to Table of Contents

Quality Rounds

Improving Palliative Care

Revised guideline helps physicians address difficult end-of-life issues.

Interview by Scott D. Smith

The Institute for Clinical Systems Improvement (ICSI) released an updated guideline on palliative care earlier this year. Howard Epstein, M.D., a hospitalist board-certified in internal medicine and the newly recognized subspecialty of hospice and palliative medicine, led the workgroup that revised the guideline. Epstein is the former medical director of palliative care and care management for Regions Hospital and is now medical director of commercial operations and clinical design for Blue Cross and Blue Shield of Minnesota. Here’s what he says physicians should know about the updated ICSI guideline.

What has changed in this version of the guideline on palliative care?
It’s important to know that ICSI does periodic revisions of all of its guidelines. This version has new tools, resources, and recommendations for talking with patients about religion and spirituality and on how to conduct an effective family care conference. Also, the section on cultural competency was beefed up. Every time a revision is done, recent articles and other evidence are reviewed for updates that would impact current best practices.

From your point of view, why is this guideline important?
It gives physicians practical tools to provide quality palliative care. Many studies have shown that when people are faced with a life-limiting or life-threatening illness, health care providers haven’t adequately addressed their pain and other physical symptoms, let alone their psychological, social, and spiritual suffering. As a hospitalist, I see patients with end-stage diseases every day. All too often, they have not had a frank conversation with their health care provider about where they are in their disease and what they want and can expect out of their care. The revised guideline provides practical scripting for how to have these difficult conversations.

Who is a candidate for palliative care?
Any patient with a life-threatening illness. Although palliative care specialists are also experts in pain management, patients with chronic pain without life-limiting issues such as chronic back pain or chronic abdominal pain are most appropriately cared for by a pain specialist. We often use the question “Would I be surprised if this person were to die in the next year?” to encourage physicians to start thinking about hospice care as an option for a patient. In considering palliative care, physicians might ask themselves, Would I be surprised if this patient died in the next two years? If the answer is no, they should start thinking about palliative care.

Some of the conditions listed in the guideline that are appropriate for palliative care include advanced cancer, heart disease, pulmonary disease, dementia, liver disease, renal disease, and neurologic disorders such as stroke, Parkinson’s, amyotrophic lateral sclerosis, multiple sclerosis, debility, and failure to thrive. Physical symptoms that can be addressed include pain, anxiety and depression, anorexia and cachexia, constipation, delirium, diarrhea, dyspnea, fatigue, and nausea and vomiting.

What is the difference between palliative care and hospice care?
Hospice is a multidisciplinary team approach offered to patients with a life-threatening illness who have a prognosis of six months or less, and for whom life-prolonging measures offer no additional benefit or no longer meet their goals. Palliative care uses the same interdisciplinary approach but brings it further upstream during the course of the illness. The key point here is that palliative care may be used in conjunction with all other appropriate medical treatments and procedures, including disease-modifying and life-prolonging treatments. It allows for relief of suffering in conjunction with usual medical care. And when medical options become limited or exhausted, instead of having to say “I’m sorry, there is nothing left that I can do for you,” palliative care allows for a smoother transition to end-of-life care and hospice.

Why don’t patients receive palliative care?
One reason is patients and families don’t want to discuss the possibility that the end of life may be approaching. Providers also fear that patients may feel we are giving up on them, and we don’t want to be perceived that way. The sad thing is that often both parties are thinking about end-of-life concerns, but they just aren’t comfortable broaching the subject.

What specific recommendations does the guideline make for initiating discussions about end-of-life issues?
The key is to acknowledge the person’s situation and empathize. Listen to them and try to learn where they are as far as their understanding of their illness and their prognosis. Listening can uncover many opportunities where you can intervene to alleviate suffering.

What if the family or the patient doesn’t want to talk about the possibility of death?
The key is to meet the patient where they are at emotionally, psychologically, and spiritually. However, it is the provider’s responsibility to give an accurate picture of what is happening and discuss a model of care that is best-suited to meet that patient’s needs and goals, part of which is to alleviate physical symptoms. Hopefully, the expanded section on how to conduct effective care conferences will give the provider the tools and resources he or she needs to be more forthright and comfortable with this often unpleasant task. If a family comes back and says, “My father died last week, and we never even discussed that as a possibility,” then you are going to have a family that is not very happy with the provider and did not get the best care from the health care system.

You say developing a care plan is critical to providing good palliative care. What goes into a care plan?
Addressing pain and other physical symptoms is usually the foremost task. That usually involves prescribing opiates and/or other classes of medications. Once those symptoms are adequately addressed, we are then able to do a more thorough psychosocial and spiritual assessment and address those needs as well.

As the disease progresses, palliation becomes more of the focus than modifying the disease itself, as fewer treatment options remain. Often, families want practical support such as assistance in accessing community support, home care, or even placement in a nursing home or residential hospice in order to best care for their loved one. Patients frequently need help completing a health care directive, commonly referred to as a “living will.” Although completion of this document and discussions about code status are important, it is most effective to include these items as part of the overall discussion about the patient’s goals for care. At Regions, a social worker is usually involved in these discussions to facilitate the logistical aspects such as how to get an advance directive witnessed or notarized as well as to share expertise and another perspective.

What mistakes do physicians make regarding pain management and end-of-life care?
Believing that opiates are just for the end of life. You can provide morphine and other opiates very effectively without hastening someone’s death. Even for people with a year or two left to live, it is not an option to not treat their pain. Providing good symptom relief doesn’t make people addicts. When pain is managed appropriately, patients can still go about the business of living.

Should physicians consider a patient’s cultural background when developing a palliative care plan?
Absolutely. In the Hmong culture, for example, you may not be permitted to use the word “dying” because that may be perceived as actually bringing on the death. So we might ask the question, “If you were to be in your 110th year, how would you want to be treated?” Every culture has its own beliefs and customs around death and dying. Although none of us can hope to be experts in each culture, it is necessary to acknowledge and respect differences and adjust our conversations and care plans accordingly.

The guideline also addresses spiritual needs. Is this really a physician’s responsibility?
I don’t think many physicians are comfortable discussing spiritual and existential issues with their patients. But it is important to understand that this plays a huge role in the life of many of our patients and affects how they cope with their illness and how they make decisions about life and death.

How do you broach the topic of religion?
One question that I’ve learned to ask from Rob Ruff, the chaplain on the team at Regions, is, “Are you a religious person, a spiritual person, or not so much?” Asking the question in such a nonjudgmental way gives patients permission to say whether it is or is not an important part of dealing with their illness. There are other particular phrases in the guideline on how you might begin to address someone’s spiritual and religious needs.

We should remember that patients confronting their own mortality may be dealing with long-dormant faith issues. They may feel that because they left the church, God is abandoning them. I have had people say, “I want to be kept alive on machines as long as possible because I think I’m going to hell. So nothing you can put me through is going to be as bad as that.”

How did you deal with that situation?
Ideally, I am having this conversation with the palliative care team chaplain present. If that is not possible, I will refer the patient to the expert, the chaplain.

What would you say to busy physicians who might feel overwhelmed by the demands of palliative care?

It is really important to let them know that it is unlikely that any single provider can be expected to have the time or resources to do this themselves. It is critical, however, to at least identify early on in the course of a patient’s
illness what their needs are so that they can be connected with other resources and people who can help
them. MM

Scott Smith is a staff writer for the Minnesota Medical Association.