It has long been a challenge to patients and caregivers alike to come to terms with the reality that there is little more that can be done that may offer even a glimpse of a cure for their condition. It can feel like a failure on the part of the physicians, and like defeat for the patients and families.
Perhaps now, more than ever, the economic burden of costly and invasive treatments for patients with incurable diseases has become a medical/ethical and socio-economical conundrum. In most places across America, patients die in costly medical facilities tethered to machines in a futile attempt to prolong their lives.
Unfortunately, they also experience uncomfortable deaths, in the midst of side effects from aggressive treatment. Research has also shown that hospitals could save $6 billion a year in costs by fully integrating palliative care programs across the U.S.
Medicare, historically would not pay for hospice/palliate care if patients were still undergoing “curative treatment”. This placed everyone in the difficult place of playing God. The rule was that in order to qualify for Medicare reimbursement for hospice, the patient needed to have a prognosis of 6-months or less to live and could not be pursuing any curative therapy.
A study led by Dr. Jennifer Temel of Massachusetts General Hospital Cancer Center suggests that it does need to be an either/or situation. In 2010, she published her landmark study in The New England Journal of Medicine showing that the introduction of palliative care early after a diagnosis of metastatic non–small cell lung cancer, along with cancer therapy, not only provided patients with a better quality of life but also appeared to prolong their survival.
“My perception of why oncologists can be reluctant to refer patients to palliative care is that they do not have a clear understanding of how palliative care can be helpful to their patients,” said Dr. Temel, who is Clinical Director of Thoracic Oncology and Director of Cancer Outcomes Research at Massachusetts General Hospital,, and Associate Professor at Harvard Medical School, Boston.
Part of the problem is that doctors have come to see death as failure, prioritizing extension of life over quality and comfort — a mentality that is then projected onto patients and their families. Many doctors fail to call in the palliative care team when patients are terminally ill, fearing that it looks as though they should expect the worst. Yet the resounding response from patients and families who have experienced the interdisciplinary benefits of palliative care, within a hospital or at home via hospice, was that they wished they had known about it sooner.
There are valid reasons why it may be difficult for oncologists to refer patients to palliative care earlier. Cancer therapy is changing dramatically, offering optimism where there once was none. Targeted cancer therapy agents in particular are blurring the survival patterns for the better, and it is hard to know “when to say when”.
As Temel states, there is currently not a standard trigger for when people need palliative care, although many researchers are studying this issue in patients with serious illnesses. She and her team are conducting a large follow-up trial to their previous study.
Palliative care is not reserved for those at the end of life. It is, defined by the World Health Organization (WHO), an approach that improves the quality of life of patients and their families facing the problem 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.
And, if that can come with certain therapies that prolong survivorship of advanced disease, then—why not?
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