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Palliative Care: We Still Have a Lot to Learn

Posted in category Palliative Care

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This week’s New England Journal of Medicine contains a fascinating randomized controlled clinical trial of best cancer care, with palliative care versus best cancer care alone, among patients newly diagnosed with stage 3 and 4 non-small-cell lung cancer. The quick version is that combined palliative and best cancer care led to significant improvements in quality of life, reduction in rates of depression, reduction in “aggressive” care in the last weeks of life, and a 2.7 month gain in life expectancy. Our editorial accompanying this study defined palliative care as follows:

Palliative care focuses on relieving suffering and achieving the best possible quality of life for patients and their family caregivers. It involves symptom assessment and treatment; support for decision making and assistance; matching treatments to informed patient and family goals; practical aid for patients and their family caregivers; mobilization of community resources to assure a secure and safe living environment; and collaborative and seamless models of care across a range of care settings (i.e., hospital, home, nursing homes, and hospice). Palliative care is provided both within the Medicare hospice benefit (hospice palliative care) and outside of it (non-hospice palliative care). Non-hospice palliative care is offered simultaneously with life prolonging and curative therapies for persons living with serious, complex, and life-threatening illness. Hospice palliative care becomes appropriate when curative treatments are no longer beneficial, when their burdens exceed their benefits, or when patients are entering the last weeks to months of life.

The palliative care intervention in this study was standardized and adherent to quality guidelines contained in the National Consensus Project for Quality Palliative Care. For those of us working in geriatric or palliative medicine, these results are not particularly surprising—plenty of other studies have demonstrated better quality and reduced health care utilization in association with palliative care services delivered in a range of models (hospice and non-hospice), settings (outpatient, nursing home, and hospital), and regions (rural and urban teaching and non-teaching hospitals, both in the U.S. and internationally). Nonetheless, the study has received enormous attention from the mainstream media as well as the blogosphere. Why? Because the palliative care intervention group lived nearly three months longer than the usual cancer care control group, despite receiving less aggressive care and less chemotherapy in their last weeks and months of life.

Though other studies have suggested that more intervention is not necessarily better, the belief in our technology and our modern medicine is deeply entrenched in the collective unconscious, at least in this country. It is literally unbelievable that doing less disease-specific treatment or doing no treatment might actually be better for you than doing something. But despite our claim of science- and evidence-driven practice, the medical profession is as caught up in this unexamined faith in our technology as the public. Hartford grantee Bruce Leff, MD, in a 2008 JAMA article, described this mindset as “gizmo idolatry.”

Some of this professional faith in interventions and technology is driven by the fee-for-service delivery and payment model of healthcare in the U.S., but some of it results from typical medical training and culture, which reinforces a common belief that with enough research, at least in theory, even death itself is avoidable. Hence, the disbelief and the headlines following publication of this study. Its conclusions are counterintuitive.

Despite its randomized and controlled design, the study had limitations. The patients (and doctors) were not blinded to their treatment group, that is, they knew which group they were in, which could have affected their outcomes. Also, there was no “attention-control” group—a group that got the same amount of human time and attention that the palliative care group got but without the palliative care skill and expertise.

In fact, we can’t tell from the paper precisely why the palliative care intervention led to the improved quality and length of life—the human attention and responsiveness? The treatment of depression, a known risk factor for death? The avoidance of dangerous hospitals and treatments in the especially vulnerable last months of life? Like any important study, it raises as many questions as it answers.

But for me, as a geriatrician, the biggest limitation is that the study focused only on people with lung cancer. Perhaps you could reasonably generalize the findings to other advanced and life-threatening cancers (cancer accounts for roughly one in four deaths in the U.S.), but you certainly cannot generalize it to what the rest of us die from—chronic debilitating diseases (usually multiple) that do not have the same predictable prognosis associated with metastatic lung cancer.

The majority of us die from dementia, end stage heart, lung, kidney disease, and frailty. People typically live for years, sometimes decades, with these chronic conditions and progressively worsening functional dependency. It is nearly impossible to determine when death is near until the last several days of life. What do we know about palliative care and hospice in this patient population–the elderly with multiple chronic conditions and functional impairment? The short answer is, not much.

In fact, the body of research on the use of hospice and non-hospice palliative care for non-cancer chronic diseases in the elderly is shockingly inadequate. The indeterminate prognosis in these illnesses makes research especially costly and difficult, since follow up would have to continue for years. But difficult is not the same as impossible. And with our rapidly expanding population of older adults, developing the knowledge we need to deliver effective palliative care to older patients is a critical priority.

Diane E. Meier, MD, is Director of the Center to Advance Palliative Care and Professor of Geriatrics and Palliative Medicine at Mount Sinai School of Medicine in New York City.

6 thoughts on “Palliative Care: We Still Have a Lot to Learn

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  5. My experience with Palliative care is limited but I believe you have total control of everything just like your regular doctor. What treatment you want, who you want to tell etc. http://9pillsonline.com/ In my area Palliative Care just basically means they are a team of doctors (specialty trained to deal with pain and psychological issues), nurses, therapists (massage, social work, art etc), voluteers.

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