Controversies in palliative care: Recognizing the specialty, pain control and palliative sedation

Just as there are controversies in medicine, in hematology/oncology and in health care reform, there are also controversies in and about palliative care. The very existence of palliative care as a distinct and certified subspecialty is itself controversial. It is often asked why there needs to be a group or “service” that purports to offer services to patients and families that the primary physician or hem/onc physician already offers. And, why should this “service” weigh-in on matters such as chemotherapy or radiation therapy or bone marrow transplantation when they are not experts in those disciplines.

“What makes you think you can provide palliative care better than we can?” is a statement expressed and, I am sure, often thought by non-palliative care physicians.

I teach residents or fellows as they rotate on our palliative medicine service that palliative care should not be an “either/or” choice for patients. Palliative care can provide support, clarity of options and goals, and symptom relief to patients and their families. These services are meant to be provided in conjunction, and not in conflict with, their oncologist. Palliative care should never act as a wedge between the patient and oncologist.

When there is the inevitable transition to comfort care and hospice, and the emphasis shifts from cure to comfort, palliative medicine services can be of benefit to an oncologist if they are willing to accept the support. Earlier collaboration between oncology and palliative medicine lessens the sense of abandonment in end-of-life discussions by providing a “seamless transition” of care between collaborating specialties. Quality-of-life issues could be enhanced by this team approach. Ideally, this should not be a turf issue or even an ego issue. The focus should be on the patients and their best interest.

Rudy Keimowitz

The American Board of Internal Medicine has recognized hospice and palliative medicine as a certified subspecialty. In addition, there is increasing recognition of palliative medicine contribution or potential contribution to long-term care, and to the availability and integration of palliative care in cancer centers. Compared with 1997, a recent report in the Journal of Palliative Medicine noted a dramatic increase in palliative care content in the medical school curricula.

The concern remains, however, of a “hidden curriculum” conflict with the visible curriculum; that palliative care essentially reflects medical failure. This perspective may be provided by faculty who have not had working experience with patients at the end of life and may be subtly influencing students on the relative value of palliative care and the reality of outcomes in patient’s illnesses.

Pain control

Although there is no controversy about the need for good pain control as a quality-of-life issue, research suggests that adequate pain control is not uniformly provided. The controversy about pain control is in how and why inadequate pain control is tolerated by the medical community and the public at large.

It is unlikely that the resistance to appropriate pain treatment is based on a lack of compassion or appreciation of suffering. Could it be fear of opioids or the regulatory agencies overlooking their use and abuse, or is it ignorance of the pharmacodynamics and pharmacokinetics, drug interactions, or appreciation of equianalgesic dosing? Could it be fear of addiction or respiratory suppression that prevents adequate dosing? Or is it a discomfort with opioids in general and dosing in particular?

I suspect it is some or all of the above.

The FDA has recently begun efforts to monitor opioid use, as opioid-related deaths have increased. The balance between appropriate opioid treatment and opioid abuse needs to be carefully approached. Physicians caught in the middle are understandably concerned and accordingly may err on the side of very conservative opioid prescriptions at the expense of under treatment of pain. The end result is the all too common suffering of our patients that could or should be alleviated. So how can this deficiency be corrected for the benefit of all?

First, continuing education in pain management should be required, particularly for medical students and residents, as more established physicians seem to be less amenable to these efforts. Such expertise should be a requirement for hem/onc fellows and not left to be an elective course.

Even surgeons and surgical fellows could benefit from learning about pain management as so much of their practice is associated with pain issues. Should pain management courses be required for medical licenses? Should there be litigation against physicians who fail to provide adequate pain management? Should there be mandatory pain and palliative care consultations for those patients with significant and seemingly refractory pain? Should those physicians with expertise and known success in pain management be accorded the same recognition and affirmation as the “great surgeon or brilliant diagnostician?”

These proposals are controversial, but surely worthy of implementation, if we mean what we say about good quality patient care.

Those of us who struggle with cancer and cancer care are surely supportive of the research and efforts to control these disorders. Cure is understandably the goal when it can be realistically provided. When it cannot, control of the disease for as long as possible is the goal, at least when it isn’t associated with meaningless suffering.

There is no controversy about the media’s effort to educate and inform the public about cancer and the exciting advances that are taking place every day.

What is controversial about the media coverage is the exaggerated hype and most unfortunate, the reluctance to discuss treatment failures, costs, complications, and the role of palliative care, end-of-life care and death. Everyone is inspired by the “fighter” and more power to him or her. However, an inappropriately optimistic view of treatments, outcomes and prognosis should be controversial and discouraged. Hope should never be suppressed, but a little sensitively expressed realism can be helpful as well. It is a fine line, but a line that should at least be addressed and not totally ignored.

Advanced directives have been touted as a necessary adjunct to the decisions and management of serious illness and end-of-life care. It has been recommended that patients describe in writing their wishes concerning code status, artificial nutrition and hydration. However, patients may view these issues differently when actually confronted by them as opposed to when they are younger and healthy.

A recent report in The New England Journal of Medicine showed that patients who prepared advanced directives received care commensurate with their preferences, especially those who had assigned a durable power of attorney for health care. Yet, in that same issue, an editorial questioned the efficacy of advanced directives, particularly in the final stages of life when the consequences of those preferences confront the reality of the situation.

At the very least, openly discussing goals of care with one’s family and, if so fortunate, choosing a knowing, loving and reliable spouse may be the best of all guides. The Physician Order for Life-Sustaining Treatment (POLST) is being adopted in many states to better define and address the patient’s wishes.

Palliative sedation

Lastly, and possibly most controversial, is the recently accepted approach of palliative sedation. Palliative sedation is also described as “controlled sedation for refractory suffering, or terminal sedation, sedation for intractable symptoms at the end of life, or continuous or prolonged sedation.”

This policy and its proponents draw a contrast to physician-assisted death or euthanasia, and “respite palliative sedation for intractable symptoms.” The obvious difference is the irreversibility, finality of the former and the hoped for reversible and hoped for amelioration of symptoms when lifted of the latter.

Palliative sedation is endorsed by the American Academy of Hospice and Palliative Medicine, American College of Physicians, American Society of Internal Medicine and the American Medical Association. The focus is on the “intent” to relieve severe and refractory symptoms “until the patient dies.” It is assumed that all efforts to provide comfort have been exhausted and only sedating the patient to the point of unconsciousness until death, can be of benefit.

Some of us find this policy problematic at its best and unacceptable at its worst. As oft stated, “The road to hell is paved with good intentions.” Furthermore, how is “refractory” defined? Has the patient been seen by a palliative care or pain consultant, and has that consultant in turn, consulted with other specialists in the discipline? How long have these various efforts been tried before being deemed refractory?

Cardiac arrests are approached by a team, not just one physician, so should there not be a comparable “pain crisis team” involved before resorting to a palliative sedation approach?

As physicians, we should consider the “sanctity of life,” a precept rarely mentioned in the literature. Yet for many of us, this represents the guiding principle in our relationship to our patients and to our role as healers. It may be a barrier to the implementation of palliative sedation. There is an alternative approach, and that is respite sedation. This is a temporary sedation to relieve symptoms in the hope that symptoms will improve, when the sedation is reversed.

What is not controversial is the universal desire/hope/expectation that we will all be treated well, with respect and dignity, and that our concerns and symptoms be addressed and controlled. “Treatment” means providing comfort, not only cure.

For more information:

• Achterberg WP. Pain. 2010;148:70-74.
• Back AL. Arch Intern Med. 2009;169:474-479.
• Billings ME. J Palliat Med. 2010;13: 319-326.
• Cameron Muir J. AAHPM Bulletin. Spring 2010:6-7.
• Fabbro ED. J Palliat Med. 2007;10: 448-492.
• Fishman J. Arch Intern Med. 2010;170: 515-520.
• Hui D. JAMA. 2010;303:1054-1061.
• Rousseau P. Am J Hosp Palliat Care. 2010;27:97-98
• Silveira M J. N Engl J Med. 2010; 362: 1211-1218,1239-1240.