Palliative Care for Serious Diseases

Jessica Becker, Brandel France de Bravo, MPH, Sasha Milbeck, and Diana Zuckerman, PhD, National Center for Health Research


What is Palliative Care?

When patients are very ill, there are different approaches to help them. Curative care is medical care that treats the disease and considers a patient’s recovery as the goal of successful treatment. However, for some patients who are suffering from chronic, long-term illnesses, or are close to the end of their lives, aggressive treatment can often make them worse and lead to an even greater loss of independence and well-being. A different form of care that has been shown to be effective for these types of patients is palliative care.

Palliative care focuses on helping relieve a patient’s pain, offering psychological support to the patient and family, and providing the patient and family with information they may need to adapt to life with a serious illness and make relevant decisions. This kind of care enables patients with late-stage cancer and other debilitating diseases, and chronic life-long conditions to live as comfortably as they can and spend meaningful time with their families. Palliative care can be provided in addition to treatment aimed at helping a patient live longer.

Some people mistakenly believe that palliative care is the same as hospice care and end-of-life treatment. Hospice care begins after treatment of a disease has been stopped, and when it is clear that the patient is approaching the end of their life. Hospice care helps end-of-life patients live as comfortably and fully as possible in their last days. Unlike hospice care, palliative care can be started at the time of diagnosis and accompany treatment. Receiving palliative care does not mean that the patient is near the end of their life; instead, palliative care can help patients adjust to long-term and serious medical conditions. Palliative care can greatly improve the quality of life and even prolong life for patients who are very ill.

Palliative care can vary greatly from patient to patient, depending on the disease. Usually, a palliative care team consists of physicians, nurses, social workers, and mental health providers who work together to manage the physical, psychological, social, and other stressors typical for patients with chronic illness. Palliative care can also be provided in many different healthcare settings, such as hospitals, assisted living facilities, rehabilitation facilities, and homeless shelters.

Palliative care is often misunderstood as meaning a patient will not get “real treatment.” That is not accurate. Instead, palliative care offers a different type of treatment. Rather than focusing on curing a disease and exposing patients to aggressive treatment and therapy, palliative care focuses on improving the quality of life and relieving patients’ pain. Many patients receive both palliative and curative care at the same time, and benefit from the combination of treatment types.

Despite the many benefits of palliative care, nearly one in three U.S. hospitals with more than 50 hospital beds do not offer it.[1]  Many doctors feel as if palliative care is not “real treatment” and do not feel comfortable discussing potential end-of-life issues with patients or planning for a life with a long term illness. However, now that palliative care is often reimbursed by public and private insurance plans, as well as Medicare and Medicaid, it is more available, and patients are more likely to consider palliative treatment.

Palliative Care as an Addition to Treatment

Studies have shown the importance of palliative care for terminal and geriatric patients. A landmark study by the Massachusetts General Hospital, published in the highly respected New England Journal of Medicine, was performed to determine the effects of early palliative care on patients with stage IV (metastatic) non-small-cell lung cancer.[2]  The study patients did not have to choose between cancer treatment and palliative care. Through random assignment, half of the 151 patients received their usual oncology care (often including chemotherapy and radiation), while the other half had visits with a palliative care specialist in addition to their regular oncology care.

Non-small-cell lung cancer is the most common form of lung cancer, and metastatic lung cancer means that the cancer was caught very late and has spread beyond the lungs and lymph nodes to other organs like the brain, bones, or heart. When lung cancer spreads like this, it is inoperable and incurable. Various treatments have been found to prolong life by months and in some cases years, but these treatments have many unpleasant/serious side effects, involve hours of chemotherapy or radiation treatment on a regular basis, and do not necessarily provide relief from the many debilitating and painful symptoms of late-stage lung cancer.

The purpose of the study was to determine if palliative care could help lessen the patients’ symptoms and improve the quality of their lives. The results were extraordinary: patients who received palliative care stopped chemotherapy sooner, were less likely to receive aggressive end-of-life care, lived significantly happier and more fulfilling lives (measured by patient’s scores on three different quality-of-life gauges), and also lived an average of 25% longer. Those that received cancer treatment alone experienced a decrease in their quality of life.

This study deserves special attention because of its implications for many patients with fatal diseases who are receiving aggressive treatments, which are associated with many painful side effects.

In addition, the patients that received palliative care plus cancer treatment were less likely to depressed: only 16% showed symptoms of depression while 38% of patients getting only standard cancer treatment had symptoms of depression.

More patients in the group assigned only to standard cancer treatments received aggressive end-of-life care, including chemotherapy, compared to patients who received palliative care plus cancer treatment.  Even though they were less likely to continue with aggressive treatment, patients receiving palliative care lived about 2 months longer than the patients receiving standard cancer treatment alone. The researchers explain their findings in several ways:

  • The improvements in quality of life, such as fewer symptoms of depression, may have helped patients live longer;
  • By pursuing less aggressive treatment, the patients enrolled in palliative care may have benefited from fewer toxic side effects which may have increased their will to live;
  • Palliative care patients got earlier referral to hospice programs and preparing for death in a supportive environment may have helped prolong life.

While this one study only focused on the use of palliative care in addition to standard cancer treatment for patients with metastatic non-small-cell lung cancer, the study has promising implications for patients with other terminal diseases as well. This deserves further study.

A different study published in The Lancet Medical Journal in 2014, focused on patients with various serious diseases who were having trouble breathing.[3] Half the patients received “breathlessness support services” for 6 weeks and the other half did not. The support services included palliative care, respiratory medicine, physiotherapy, and occupational therapy.  Six months later, the patients who had received the support services had less trouble breathing and were more likely to still be alive. The services helped all patients breathe more easily but only improved survival for patients with Chronic Obstructive Pulmonary Disease (COPD), a chronic inflammatory lung disease that causes reduced airflow in the lungs, and patients with non-cancerous lung disease.

A third study published in the Journal of Pain and Symptom Management in 2011 analyzed 16 studies of palliative care and found that patients who had at least one consultation for palliative care spent an average of 4.4 fewer days in the intensive care unit.[4]

Palliative Care for Terminal Patients

While many patients with serious diseases can benefit from palliative care, other studies have also shown the importance of end-of-life discussions and palliative care specifically for terminally ill patients. The National Institute of Health (NIH) Coping with Cancer study (2002-2008) presented findings about the importance of palliative care and end-of-life discussions for patients with terminal and late-stage cancer. [5] The patients in the study were on average four months away from death, but two out of three reported they had no end-of-life discussions with their physicians. These patients were more likely to suffer through aggressive treatment, and their caregivers and family members were three times more likely to suffer major depression after their death. However, the one-third of patients that did have end-of-life discussions with their physicians were found to be less likely to end up in intensive care, go through aggressive treatment, were physically more capable, and their families were less likely to suffer from depression and anxiety following their death.

The Bottom Line: Studies show the importance of palliative care in improving patients’ quality of life, reducing depression, and possibly extending life. In order to help patients as much as possible while they are coping with serious or even fatal diseases, more research is needed to determine how different types of patients can benefit from which types of palliative care.

Citations

  1. Dumanovsky, T., Augustin, R., Rogers, M., Lettang, K., Meier, D. E., & Morrison, R. S. (2016). The Growth of Palliative Care in U.S. Hospitals: A Status Report. Journal of Palliative Medicine, 19(1), 8-15. doi:10.1089/jpm.2015.0351
  2. Temel J, Greer J, Muzikansky A, Gallagher E, Admane S, Jackson V, Dahlin C, Blinderman C, Jacobsen J, Pirl W, Billings J, Lynch T: Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Caner. New England Journal of Medicine 2010; 363:733-742.
  3. Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, McCrone P, Booth S, Jolley CJ, Moxham J: An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respiratory Medicine Journal 2014. 979-87. http://www.ncbi.nlm.nih.gov/pubmed/25465642?dopt=Abstract”>http://www.ncbi.nlm.nih.gov/pubmed/25465642?dopt=Abstract
  4. J. Brian Cassel, Kathleen Kerr, Steven Pantilat, Thomas Smith, Donna McClish: Does Palliative Care Consultation Reduce ICU Length of Stay? Journal of Pain and Symptom Management 2011. 41, 191-192. http://www.jpsmjournal.com/article/S0885-3924%2810%2900752-9/fulltext
  5. Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., Mitchell, S. L., Jackson, V. A., Block, S. D., Maciejewski, P. K., & Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), 1665–1673. https://doi.org/10.1001/jama.300.14.1665