Palliative Care: Improving the Quality of Life of Patients and Families
June 5 marked National Cancer Survivors Day, a day designated not only to celebrating those who have survived cancer, but to giving inspiration to cancer patients who were recently diagnosed. As more people are surviving cancer, there’s growing concern about how to care for their needs and improve long-term quality of life for patients and their families. That’s the essence of palliative care.
The basics of palliative care
Palliative care is specialized medical care that provides an extra layer of support to patients with serious illnesses and their families. Palliative care is provided by a team of health care professionals – including nurses, social workers, chaplains, dieticians, and others – who work alongside a patient’s doctor and are dedicated to addressing the symptoms of the disease, side effects of treatment, and stress associated with a serious illness.
Palliative care specialists are trained to help patients navigate the complex health care system and to manage symptoms and side effects including pain, nausea, vomiting, fatigue, anxiety, difficulty sleeping, loss of appetite, and more – issues doctors don’t always have time to address as they work to treat the patient’s disease.
Palliative care is often confused for hospice care, but palliative care is for anyone facing a serious illness from the point of diagnosis, through treatment, and survival. Hospice is a critical Medicare benefit that provides palliative care for terminally ill patients who are no longer receiving curative treatment.
Palliative care is appropriate at any age and any stage of a disease, and can be provided with curative treatment. Ideally, a patient is referred to palliative care specialists at the point of diagnosis, but patients can ask for palliative care services at any time. Palliative care is most widely available in hospital settings, but a team can also provide it at home, over the phone, or in an outpatient clinic. These services are covered by many insurance plans.
Palliative care is often confused for hospice care, but palliative care is for anyone facing a serious illness from the point of diagnosis, through treatment, and survival. Hospice is a critical Medicare benefit that provides palliative care for terminally ill patients who are no longer receiving curative treatment.
The ultimate objective of palliative care specialists is to improve overall quality of life for the patient and his or her family.
The research supporting palliative care
Jennifer Temel, MD
The New England Journal of Medicine published a pivotal study by Jennifer Temel, MD, in 2010 showing that palliative care has tremendous benefits for cancer patients and their families. In the study, metastatic non-small cell lung cancer patients who received palliative care alongside cancer treatment lived longer and required less aggressive care at end-of-life. Temel pointed out, “timely introduction of palliative care may serve to mitigate unnecessary and burdensome personal and societal costs,” which likely saved the health care system money.
This study built the momentum for palliative care and additional research into its effectiveness, and since its publication, 11 similar studies have continued to show that palliative care benefits patients and their families.
One of those studies, conducted by Marie Bakitas, DNSc, APRN, NP-C, AOCN, ACHPN, FAAN, and published in the Journal of Clinical Oncology in March 2015, not only showed the positive effect palliative care can have on patients and their families, but also showed how receiving palliative care from the point of diagnosis has an even greater impact.
Bakitas’s trial followed more than 200 patients with common cancers (e.g. stomach, gastric, breast) who were randomly assigned to receive an in-person palliative care consultation and six palliative care sessions with a nurse over the phone either starting soon after diagnosis or 12 weeks later. While self-reported symptom management between the two groups wasn’t statistically different, there was a marked survival advantage to starting palliative care early – 15 percent more patients were alive at one year.
Thomas Smith, MD
“If that was a drug for pancreas cancer, we’d be demanding it at the FDA,” said Thomas Smith, MD, AACR member and professor of palliative medicine and oncology at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, about the Bakitas study. Smith was featured in an article about palliative care in the spring 2014 issue of Cancer Today, a magazine for cancer patients, survivors, and their caregivers published by the AACR.
“If that was a drug for pancreas cancer, we’d be demanding it at the FDA.” – Thomas Smith, MD
It’s not just the patient who benefits from palliative care – the patient’s family often feels better too. Novel research presented by Areej El-Jawahri, MD, an assistant in medicine at the Massachusetts General Hospital Cancer Center, at the recent American Society of Clinical Oncology (ASCO) Annual Meeting showed caregivers of metastatic non-small cell lung cancer patients receiving early palliative care had significantly fewer symptoms of depression and better social functioning and vitality than caregivers of patients who received standard care.
“This study suggests that early palliative care creates a powerful positive feedback loop in families facing cancer,” said El-Jawahri in a press statement.
Increasing access and awareness of palliative care
While there is strong research supporting the use of palliative care for patients with serious illnesses, there are still many patients who don’t receive palliative care or even know what it is.
There are many reasons for this, one of which is the lack of in-depth training offered to oncologists and other health care professionals that compose the palliative care team. There’s a need for more grants to ensure all oncologists and other health professionals get training in the core principles and practices of palliative care – a main recommendation in the 2014 National Academy of Medicine report on how to improve patient quality of life – and more funds for fellowships related to palliative care.
And while we have research showing that palliative care elongates life and improves overall quality of life, we still don’t have a clear idea of how best to structure the palliative care team. Therefore, we need more clinical trials that examine various models of palliative care so health care professionals know what works best to support patients and their families.
With the world focused on Vice President Joe Biden’s National Cancer Moonshot Initiative, palliative care is one critical aspect of cancer treatment and research that is and should remain a part of the conversation. As a recent editorial in The Journal of the American Medical Association put it, “As billions of dollars are invested in seeking the cure for cancer, attention to the quality of life of people living with cancer and the effect of cancer treatment are at least as important to address and far more achievable in the near term.”
Hello Thanks! your post fantastic with a lot of useful information.
Palliative care is well explained in this post. As moving from basics to research and to awareness is shown clearly. Thanks for such knowledgeable post.
As a patient with a degree in social work, I must step up and say that the social worker assigned to me during radiation for DCIS was a negative not a palliative figure in the situation. I felt invaded and as if that person were gathering material for his next degree.