End-of-life care: We’re doing it wrong, experts say

In his new best-selling book Being Mortal: Medicine and What Matters in the End, Atul Gawande, MD, a general and endocrine surgeon, takes the U.S. health system to task for focusing on prolonging life rather than maximizing the quality of life for terminally ill patients.

“People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms,” Dr. Gawande writes. “…The way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.”

A new Institute of Medicine report, released in September, similarly urges the U.S. to improve end-of-life care. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life calls on the nation to increase the number of palliative care specialists and train all clinicians to better care for terminally ill patients.

A number of the osteopathic medical profession’s palliative care experts agree that most physicians need to do more to ascertain the priorities of seriously ill patients and accordingly help them choose a customized care plan.

“The medical education system needs to do a better job of preparing future physicians to care for people who are in chronic pain and have other debilitating symptoms as they approach the end of life,” says geriatrician Thomas A. Cavalieri, DO, the dean of the Rowan University School of Osteopathic Medicine (RowanSOM) in Stratford, New Jersey. Whether life-prolonging therapies are continued, physicians must prevent bedsores and control the common symptoms of serious illness, such as coughing, mucus, nausea, vomiting and constipation, he says.

Because of their holistic approach, knowledge of osteopathic manipulative treatment and communication skills, DOs are especially well-trained to provide palliative care, Dr. Cavalieri says.

“Looking at the patient as a whole—body, mind and spirit—is critical,” he notes. “What’s more, a lot of patients who are at the end of life are very sedentary. DOs’ understanding of the interrelationship of structure and function is a big plus. OMT can be very beneficial at the end of life to improve range of motion.”

Physicians need to learn how to talk with patients and their caregivers about the risks of burdensome interventions that may only aggravate suffering, Dr. Cavalieri says. Nearly 30% of Medicare costs are spent on patients’ last year of life, and much of the care is futile, he notes.

Critical care accounts for 20% of all health care costs in the U.S., according to a 2013 JAMA Internal Medicine study. The critical care specialists surveyed for the study estimated that 11% of their patients received futile care and nearly 9% probably received futile care—at a cost of more than $4,000 per day. Approximately 85% of the patients who received treatment perceived as futile died either before hospital discharge or within six months of ICU care—with survivors remaining in “severely compromised health states,” the article reported.

Crucial conversations

From the first patient encounter, all doctors should be having conversations with patients about their values and interests, stresses palliative medicine specialist Deanna K. Bower, DO. For primary care physicians, these talks should take place before a patient is diagnosed with a serious illness.

“Find out what’s important to patients, what they like to do, what they consider to be good quality of life,” says Dr. Bower, who is the hospice medical director for Housecall Providers in Portland, Oregon. “That way, even if you’re not yet considering a particular decision, you’re building relationships. You have their trust, and you know what’s important to them and what’s not important to them.”

Physicians who understand their patients can better advise them when it comes time to make crucial treatment decisions, she says.

“You’ll be able to say, ‘This is what you’ve told me is important to you about your quality of life,’ ” notes Dr. Bower. “ ‘And here are your options. Option A will allow you to achieve what you said you wanted. Option B could take you further than that, but you may face greater risks and more adverse side effects.’ ”

As a patient’s disease or condition progresses, the physician should continue discussing quality of life with him or her.

“Goals of care do change,” Dr. Bower says. “If you have someone with a slow-moving progressive illness, he or she may say, ‘I used to think that I’d never want to be confined to bed and depend on someone to wipe my bottom, but now that I’m in this state, it’s not so bad,’ ” Dr. Bower explains.

Physicians need to help patients identify their long-term versus short-term goals, notes geriatrician Tracy L. Shaub, DO. Palliative medicine isn’t about forgoing aggressive measures, she says. It’s about helping patients determine when to take drastic steps to prolong their lives and when to concentrate on comfort care.

“Some treatments with severe side effects may be worthwhile in the long run,” says Dr. Shaub, who chairs the family medicine department at the Ohio University-Heritage College of Osteopathic Medicine in Athens. “For example, one patient I took care of had rectal cancer. It was curable if she could get through this round of radiation, but she was having such intense pain and radiation burn that she said, ‘I’m not doing this anymore.’

“In such situations, I remind people of their long-term goals and encourage them not to give up. I also point out that my knowledge of pain and symptom management gives me the tools to ease their short-term distress.”

Palliative medicine as a discipline evolved from hospice care, points out Andrew Kamell, MD, the director of the new AOA-approved hospice and palliative medicine fellowship at Parkview Medical Center in Pueblo, Colorado. Physicians involved in hospice care, he says, were asking themselves, “Why are we waiting until patients have less than six months to live before we focus on pain and symptom management, stop futile interventions, and converse with patients about end-of-life care?”

“The idea of palliative medicine is to get involved early in the course of a serious illness so that patients have the maximum quality of life,” Dr. Kamell says. “We also want to make sure that whatever we do makes sense for patients—that they understand what’s going on and even have some control.” Palliative medicine is individualized care, he stresses.

“I’m a huge believer in chemotherapy and ventilators and the most aggressive medical treatments as long as they make sense for that person,” says Dr. Kamell. But for some people, such interventions do not make sense, he says.

A life worth living

In Being Mortal, Dr. Gawande describes in detail the many treatment decisions his father, a urologist, made after learning he had a growing tumor in his cervical spinal cord. He opted not to undergo the surgery that might have extended his life because he didn’t want to risk becoming paralyzed. He hoped to practice surgery and play tennis for as long as possible. Able to control his neck pain with medication, he continued to work and play sports for more than two years before succumbing to paralysis and death.

“After my father was given his diagnosis,” writes Dr. Gawande, “he initially continued daily life as he always had—his clinical work, his charity projects, his thrice-weekly tennis games—but the sudden knowledge of the fragility of his life narrowed his focus and altered his desires. … It made him visit with his grandchildren more often, put in an extra trip to see his family in India, and tamp down new ventures.”

At each step along the way, Dr. Gawande’s father made difficult choices but always opted for the course of action that would maximize his function.

For seriously or terminally ill patients, quality of life may depend on maintenance of physical, cognitive and emotional function, notes Katherine E. Galluzzi, DO.

“Geriatricians recognize that what has the greatest impact on a person’s life is not how many diagnoses they have but rather what functional challenges they have,” says Dr. Galluzzi, the chair of geriatrics at the Philadelphia College of Osteopathic Medicine. “A simple but profound question that must be asked is ‘What bothers you most?’ ”

Care and treatment decisions, Dr. Galluzzi says, may be influenced by several functional dimensions, known collectively as the “five I’s”:

• Impaired homeostasis. Patients in this state are frail, have organ system failure and may have lost ambulatory function. “We are not going to fix these things,” Dr. Galluzzi says. “But we can work to improve patients’ sense of overall well-being.”
• Iatrogenesis. Broadly speaking, this term refers to physician-induced harm. In geriatrics, it refers specifically to the adverse effects of polypharmacy and burdensome procedures. For example, if an elderly person has metastatic cancer that has spread to the spine, a physician should ask the patient to consider whether the nausea, fatigue and hair loss from chemotherapy—on top of the severe pain from the cancer—might outweigh possible gains in longevity.
• Immobility and falls. The inability to walk can cause many other problems, such as pneumonia, pressure ulcers and blood clots. Falls, in turn, are especially treacherous in the elderly. “One of the things we are always asking our patients is, ‘Have you had any falls recently?’ ” Dr. Galluzzi says. “Falls are a marker for mortality, not just morbidity.”
• Incontinence. Lack of bladder and bowel control means dependence and often profound emotional distress for patients.
• Incompetence. Cognitive changes such as dementia and delirium frequently accompany the final stages of decline. Many individuals fear loss of their intellectual function more than they fear pain.

Physicians need to address these obstacles to well-being during goals-of-care discussions with seriously ill patients and their caregivers, Dr. Galluzzi says.

Don’t fear candor

Although communication is so critical in palliative medicine, physicians often are afraid to have honest conversations with their patients, observes Stephen M. Scheinthal, DO.

“As a geriatric psychiatrist, I talk to patients all the time who are at the end of their lives,” says Dr. Scheinthal, who chairs RowanSOM’s department of psychiatry. “Some of them are very afraid about what is coming next, but most are very open and accepting. They will say, ‘I’m tired. I’ve had enough.’ And they are looking for someone who is going to listen to them, who is not afraid to hear what they have to say.

“I’ve had patients who actually say good-bye to me.”

One such patient was an elderly woman who still seemed relatively healthy, though she lived in an assisted living facility. When Dr. Scheinthal visited her each week, she would always give him a kiss. “But one week when I walked in and she gave me her ritual peck on the cheek, she said, ‘Dr. Scheinthal, this is the last kiss you are going to get.’ ” he remembers.

When he asked her why, she said she was pretty sure she would be passing soon. Although he reminded her that she was still in good health, she reiterated her feeling that her time had come.

“Sure enough, she died the Wednesday following our session,” he says.

Dr. Scheinthal says he has learned so much from this patient and others.

“Physicians are too much in the business of trying to cheat death or prevent death,” Dr. Scheinthal says. “Sometimes what we need to do is help ease people through death.

“Our role as physicians is not just to extend life. We should be more focused on improving the quality of the life that is left.”