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Dilemmas of Dearly Departing
'Great Teacher' Payne Examines End-Of-Life Issues at Grand Rounds

By Carla Garnett

Photos by Bill Branson

On the Front Page...

It's not something most people want to think about, even though it's one of the two sure things in life. Not taxes...the other one. It's not surprising then that even seriously ill people, their family and loved ones — and perhaps especially their doctors and nurses — may all be reluctant to consider that the end may be near. Nevertheless, in recent times the medical community has increasingly focused on finding the best way to come to terms with terminal illness, grappling with what guest speaker Dr. Richard Payne calls the "the big questions or emerging problems" in palliative medicine.


"We as autonomous human beings want to and have an innate need to be in control of our destiny and our lives," acknowledged Payne, new director of the Duke Institute on Care at the End of Life, Duke University Divinity School, who delivered a Clinical Center Grand Rounds lecture in the Great Teachers series on Apr. 14. "But, what does that mean and how does that play out in the context of having serious illness that may be life-limiting? How do we approach this in a death-denying society like ours?"

Dr. Richard Payne
Consider the case of a 70-year-old Russian immigrant with recurrent colon cancer. Widowed with adult children, the woman was frequently in and out of the hospital for symptom-management, specifically physical pain and an infection, both of which were solved with medication. One day — seemingly out of the blue — she calmly and rationally addresses the medical team during rounds, "Dr. Payne, just stop beating around the bush. My life is over. My children are grown. My husband is gone. Just turn up the morphine drip and let me exit."

"What would you do?" Payne queried the audience.

"Well, what are the spiritual dimensions of her pain?" countered Dr. Ann Berger, who established the CC's Pain and Palliative Care Service in 2000. The goal of palliative care, as she had explained in an earlier lecture, is "to cure sometimes, to relieve often and to comfort always. Total pain is physical pain plus emotional suffering. Suffering is psychosocial issues, loss of work, family functioning, financial concerns, fear of death and spiritual issues. This is very important because this is where we miss the boat in medicine. How we miss the boat is that we think to take care of suffering we'll just give a medication of some type. There is no medication for suffering."

In his lecture, Payne pointed out five major considerations in quality end-of-life care: symptom management; a sense of shared decision-making between doctor and patient; satisfaction with care on the part of the patient and the family unit; coordinated care among the entire caregiving team; and continuity of care.

Dr. Paul Plotz (l), chief of the NIAMS Arthritis and Rheumatism Branch and host of the Great Teachers lectures, and Dr. Marion Danis, head of the section on ethics and health policy in the Clinical Center's department of bioethics, welcome guest lecturer Dr. Richard Payne, director of the Duke Institute on Care at the End of Life.

The National Hospice and Palliative Care Organization, Payne said, also suggests ways of coping that include discovering the person's "self-determined life closure — finding out what's most important to the person suffering the life-limiting illness in terms of bringing their life to a conclusion," offering safe and comfortable dying — "incorporating a more global concept of psychological comfort as well as physical comfort, and providing for effective grieving for the patient's loved ones who are left behind."

Contemplating these topics may be even harder for patients — and for researchers — at NIH and other medical research environments, according to Berger. "Patients come here with an expectation that they're going to get better," she said in an interview after Grand Rounds. "[Principal investigators] couldn't be in this unless they thought their research was going to work. When it doesn't work out that way, for whatever reason, [accepting that] may be a little more difficult for both the patient and the physician. Physicians by and large are still not good at treating end-of-life issues. We are a death-denying society. Death is seen as failure."

Berger further explained that the palliative care team makes an important distinction in terms, stressing the difference between curing and healing. "Curing is curing the illness," she said, "but emotionally, spiritually, a person can still be healed. People can be healed without being cured."

What, then, is a physician to do about a 38-year-old Latina single mother with HIV/AIDS and metastatic breast cancer who is poor, has two children under age 10, is "angry with God" and becomes "quite disruptive" in clinic visits? "How do you approach the pain that comes from spiritual distress?" asked Payne. "I can tell you there is no morphine dose for this suffering."

Payne also touched another issue that commonly weighs on physicians treating people who have chronic pain, and such pain coupled with terminal illness. For instance, how would you handle the 42-year-old veteran who is addicted to heroin and cocaine, but won't comply with treatment, or the 54-year-old multiple myeloma patient who intimidates the medical staff with his physical presence and will not adhere to prescribed therapy?

"Because pain is a subjective effect and because a high-quality treatment and evaluation really involves entering into a trustful relationship with the patient," Payne says, "the co-occurrence of chemical dependency and psychological disorders is often quite confounding."

Payne points out major considerations in quality end-of-life care, including self-determination, comfort and grief

Think about two elderly African American people, unrelated, ages 80 and 83 respectively. The man has metastatic prostate cancer and the woman has diabetes, hypertension and has survived two heart attacks. As their physician approaches them separately to discuss advance care planning, the man — suspecting racial discrimination — demands to know if the doctor talks to all of his patients about such issues, and the woman — unwilling to face even thinking about the inevitable — claims, "I am not sick. I don't want to talk about this stuff."

"These are hard, hard issues," Payne concluded, describing the multi-faceted dilemmas facing today's medical teams, "but these are human beings."

As for the immigrant, the single mom, the vet and the several other people described throughout Grand Rounds, Payne recalled that although he treated each patient individually and each required a different course, one lesson held true for all: empathy goes a long way.

"It was only by sitting down...and doing a mental exercise, by visualizing how I would have thought through this if I were the one in that bed," he said. "My point is that to see suffering, we have to get into the skin of the person who is suffering."

Paraphrasing a scene from The Godfather, Payne said the key for health professionals is to "try to see the world as other people around [you] see it. We don't do enough of that in medicine. We are so reductionist in our approach, and so into solving a particular problem that we're often not willing to sit down and see the problem as the patient sees it."

In the past few years, Payne said, experience and thoughtful discourse in the emerging end-of-life field has highlighted the importance of many concepts, including the necessity of assembling a multidisciplinary team for every patient that includes not only physicians and nurses, but also skilled social workers, clergy and other counselors. Still, he pointed out, the territory remains unfamiliar, the footing often unsure for those in medicine. Effective palliative care is relatively new, even though terminal illness is not.

"We have a saying, 'Pain is the oldest human problem, but probably the youngest medical specialty,'" Payne offered at the start of his lecture. "I think we're in the middle of a real renaissance and a real interesting rebirth of how we are thinking about fundamental things like pain, how we evaluate subjective effects in individuals and how we approach and alleviate human suffering."

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