LIFE-THREATENING ILLNESS: Too Early for Palliative Care?

“It’s too early for palliative care,” said the critical care specialist, pointing at the patient in Room 11 as we were making rounds in the ICU. “She wants everything done!” he continued. The patient was a 67-year-old woman with metastatic ovarian cancer admitted to the ICU for pneumonia, pleural effusion and respiratory failure.

This episode illustrates a much-too-common misconception of the role of palliative care. For many physicians, palliative care is equal to end-of-life care: an intervention that should be implemented only with terminal patients who are no longer candidates for treatments that affect the course of their disease. Interestingly, their belief is closer to the concept of hospice than to palliative care, so we need to take a step back and look at some background and history. By doing so, we will not only realize that palliative care should be part of early interventions, but also that many primary care physicians and specialists already practice palliative care.

The word palliative comes from the Latin pallium, meaning “cloak,” as for comfort. Physicians for centuries have provided comfort to the ill, particularly before the advent of sophisticated medical and surgical treatments. If we look at the modern institutional evolution of hospice and palliative care, however, hospice started first. Modern hospice was founded in the United Kingdom in 1967, when Dame Cicely Saunders created St. Christopher’s Hospice. The first hospice in the United States was founded in 1974, and in 1986 the federal government introduced hospice benefits. Modern palliative care developed from services provided by hospice physicians and nurses, but it is now mostly independent from hospice.

According to the World Health Organization, “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”[1] The WHO goes on to say that palliative care:

• “uses a team approach to address the needs of patients and their families.”
• “will enhance quality of life, and may also positively influence the course of illness.
• “is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy.”

In 2012, the American Society of Clinical Oncology (ASCO) concluded that, “Combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”[2] Their conclusion was the result of a comprehensive literature review demonstrating that palliative care intervention improves symptoms, quality of life and patient satisfaction, and that it reduces caregiver burden.

One of the reports reviewed by the ASCO was a prospective randomized study conducted in 151 patients with non-small-cell lung cancer.[3] One study group received routine oncology care, and the other received both palliative care and routine care. The researchers found that the group receiving palliative care had better quality of life and fewer patients with symptoms of depression. More surprisingly and unexpectedly, patients who received palliative care lived longer despite receiving less aggressive treatment. Median survival for the palliative group was 11.6 months, vs. 8.9 months for the routine oncology group.
In this study, palliative care intervention was associated with less aggressive treatment, longer survival, better quality of life and less depression. Who would not want that for our patients?

Palliative care is a team approach that addresses physical, psychosocial and spiritual suffering in seriously ill patients. Palliative medicine specialists are trained in managing pain, nausea/vomiting, dyspnea, delirium, constipation and wounds, among other conditions. They are also experts in communication skills, such as those needed for breaking bad news and resolving conflicts between patients, families and healthcare teams. The palliative team also coordinates care when many consultants are involved and families become confused with medical terms, diagnostic tests and therapies to the point that they lose sight of the “big picture.” Palliative specialists also provide support for the healthcare team and defuse tensions in emotionally charged situations.

Basic pain and symptom management and communication skills are in the toolbox of any physician, particularly in primary care; family physicians and internists have used these skills for decades. But when symptoms become complex, or when patients experience new symptoms from the drugs they are taking, a palliative specialist’s evaluation is indicated. Palliative specialists, for example, often see patients who experience neurotoxicity from opioids. This condition is caused by opioid metabolites and is manifested by increasing excitatory effects on the central nervous system. Patients experience myoclonus, irritability, sleeping disturbances and allodynia. Yes, this is an instance when opioids actually cause pain! And it is a situation that is hard to detect and manage.

The trans-disciplinary palliative team approach also includes skills that are beyond the strictly medical, like evaluating and managing psychosocial and spiritual issues. These additional resources make palliative care an excellent complement to the traditional care provided by physicians and nurses.

Under the newly implemented Affordable Care Act, accountable care organizations will be monitoring metrics of quality and efficiency to implement good medicine that is also cost-efficient. The next few years will also bring a shift of focus from “volume” to “value.” The new system will reward cost savings only if supported by good quality performance. It will also look at readmission rates for CHF and COPD patients and optimization of diagnostic tests and interventions in chronic diseases.

In this new context, palliative care can help coordinate care, optimize symptom management and improve patient well-being. The palliative team can also honor patient and family wishes by discussing them in the appropriate environment at the appropriate time--not in the chaos of an emergency room where symptoms and emotions run out of control. The palliative approach can reduce the burden of decision-making for families and decrease interventions that many patients do not want. Palliative care can also play an active role beyond the confines of hospitals. There are already many examples of outpatient and homecare services that allow the palliative team to follow patients after discharge.

Palliative care has been around in different forms for centuries and has evolved into a service that can address suffering at many levels. It has the potential to make our healthcare system more patient- and family-centered and more efficient. It can also bring psychosocial and spiritual dimensions back into medicine.

As to the patient in Room 11 of the ICU, she was eventually seen by the palliative care team, which helped her through that difficult time, as it has done for so many other patients before and since. Some of those patients are back to their normal life; some have left this earth in peace.

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Dr. Elia is medical director of palliative care services at Marin General Hospital.

Email: eliag@maringeneral.org

References

1. World Health Organization, “WHO definition of palliative care,” www.who.int/cancer/palliative/definition/en/ (2014).

2. Smith TJ, et al, “ASCO provisional clinical opinion: integration of palliative care into standard oncology care,” J Clin Oncol, 30:880-887 (2012).

3. Temel JS, et al, “Early palliative care for patients with metastatic non-small-cell lung cancer,” NEJM, 363:733-742 (2010).