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Sukham Blog – A monthly column focused on South Asian health and wellbeing.
My wife’s oncologist recommended a palliative-care consultation during one of her checkups. This was the first time we heard about it and my wife, subsequently, received beneficial palliative care alongside her ongoing treatment for cancer. Since then, I’ve continued to learn more about palliative care and how it helps patients living with various kinds of serious illnesses. I’ve also realized that most people know very little, or are misinformed about palliative care. We need to understand this relatively new medical specialty; it can do a lot for us and our loved ones in the event of a serious health issue.
Palliative care is specialized care for people living with a serious illness. It is a type of care focused on providing relief from the symptoms and stress of different kinds of serious and chronic, progressive illnesses, and is provided in addition to, and concurrent with, ongoing medical care. It supports the patient’s ability to feel better while undergoing treatments which could be intense and sometimes not well tolerated. The goal of palliative care is to improve quality of life for both the patient and the family.
To palliate is to make something – for example, a disease or its symptoms – less severe or unpleasant. Palliative Medicine is relatively new. It has its roots in the work of Cecily Saunders and Elisabeth Kübler-Ross in the 1960s. The term Palliative Care was coined in 1974 by Dr. Balfour Mount, a surgical oncologist at The Royal Victoria Hospital in Montreal, Canada. It was recognized as a field of specialty medicine in Great Britain in 1987, the same year that Cleveland Clinic started the first Palliative Medicine service in the United States. It became a board-certified subspecialty of medicine in the United States in 2006, just 15 years ago.
Let me repeat: Palliative care is specialized care for someone living with a serious or chronic progressive illness, focused on providing relief from the symptoms and stress of the illness, to improve quality of life for both the patient and the family. It is based on the needs of each individual patient and can be provided at any time during his or her illness, along with the treatment he or she is already receiving, regardless of the prognosis, expected trajectory of the disease, or age of the patient.
What, specifically, does palliative care do? It provides relief from pain, nausea, constipation, neuropathy, shortness of breath, or other side effects and symptoms caused by the illness and/or treatment. It helps when patients and their families have trouble coping with the illness and are anxious, depressed, stressed, or fatigued, and enables them to better carry out their daily tasks and do the things they want. Palliative care can also improve the quality of life for both the patient and his or her family.
What is meant by quality of life? That depends on the patient! He or she defines what is important at that moment and in the future. The palliative care team works with the patient and his or her family to understand what’s important and what matters most to them, and takes that into account to formulate a treatment plan and provide the best possible support to help realize those goals.
I used the phrase palliative-care team. Care is provided by a specially-trained, multidisciplinary team that typically includes doctors, nurses, medical assistants, social workers, chaplains, and other specialists. This is because palliative care extends beyond a patient’s physiological and medical needs and addresses other factors that may be affecting their quality of life, including psychological, spiritual, and social needs. These needs vary from patient to patient. In addition, they can vary over time for a given patient.
Needs could include: help with figuring out what medications should be taken and when; thinking things through, and weighing options when faced with decisions on a suggested next step in treatment; help navigating the complexity of a large hospital when referred to different specialists or when various tests are ordered. Sometimes stress can overwhelm the patient, caregiver, or another family member, and they could benefit from having a caring listener, or just a hand to hold for a while. The costs of treatment are a huge concern for many of us, so the assistance of a qualified individual to sort through financial questions might be valuable. When serious illness brings up existential and spiritual questions, trained chaplains could provide answers, solace, comfort, and a compassionate presence. Nutritionists who understand the patient’s diagnosis and condition can help address dietary concerns.
Palliative-care specialists treat people living with many types of serious and chronic illnesses, regardless of their age, stage of the disease, and whether or not they are still receiving curative treatment; these include cancer, congestive heart failure, chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and other life-limiting diseases. Pediatric palliative care is an upcoming specialty. During the current pandemic, it’s an essential part of treatment for those who have contracted COVID-19.
Many confuse palliative care with hospice and believe a recommendation for palliative care implies the patient has a condition that will imminently end his or her life. This is not correct. Palliative care can be very useful for those managing a long-term illness. Quality research provides evidence that the early introduction of palliative care provides all the benefits described above, and results in fewer hospitalizations, a reduced burden on the family, and greater satisfaction overall. Hospice is a form of palliative care for those patients judged to be approaching end of life – and typically have six months or less left to live – who decide to focus on comfort instead of prolonging treatments.
Most private insurance plans, as well as Medicare and Medicaid, cover palliative-care services in hospitals and nursing homes. However, you should always consult with your insurance provider to understand your coverage in detail.
I hope this has helped you better understand Palliative Care and dispel any related misconceptions.
Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within the South Asian community. Sukham provides curated information and resources on health and well-being, aging, and life’s transitions, including serious illness, palliative and hospice care, death, and bereavement. Contact the author at sukhaminfo@gmail.com
Sincere thanks to Drs. Neelu Mehra at Kaiser Permanente, and Kavitha Ramchandran & Grant Smith at Stanford Health Care – Palliative Care Physicians who have contributed greatly to my understanding of Palliative Care.
With sincere thanks to Trung Nguyen at Pexels for the use of her beautiful photograph.