What makes for a good quality of life in the face of a serious illness?
While most people want to live without pain and minimize unpleasant side effects from treatment, what makes for a meaningful life is unique to each individual. For one person, it may be spending time with family, even if it’s from a hospital bed. For another, a weekly swim in the ocean may be essential, and life feels empty without it.
Just as cardiology is a medical specialty focused on the heart, palliative care (also referred to as palliative medicine) is a medical specialty focused on quality of life. Palliative care specialists help patients and their families navigate the physical, emotional and spiritual challenges of “life-limiting” and serious illnesses, says palliative care physician Jessica Kaltman, MD.
“It’s a supportive team of physicians, nurses, social workers and chaplains who address patients’ psychosocial needs, manage their symptoms and ensure that their goals and priorities align with the medical plan of care,” Dr. Kaltman says. “Our goal is to really make sure that they have the best quality of life they can while they're going through their disease and treatments.”
Who is eligible for palliative care?
People are referred to palliative care after being diagnosed with cancer or other serious illnesses, such as ALS or Parkinsons; end-stage lung diseases, including chronic obstructive pulmonary disease or interstitial lung disease; or end-stage liver or kidney disease.
People often confuse palliative care with end-of-life care. While palliative care specialists have expertise in addressing the unique needs of patients and families at the end of life, palliative care is really about helping people live as well as possible at any stage of a serious illness, Dr. Kaltman says.
Receiving palliative care shortly after diagnosis can ease symptoms, reduce stress and often improve overall quality of life, she says. Advanced illnesses that require oxygen or dialysis may limit independence or travel, and palliative care can help make day-to-day life easier and more comfortable, she adds.
Palliative care has multiple aims: easing symptoms such as pain, nausea and trouble sleeping related to the disease or its treatment; providing psychosocial support to deal with the emotional and spiritual ups and downs that come with facing serious illness; supporting individuals to make informed health care decisions that align with their goals and priorities; and ensuring a person- and family-centered approach to their medical care, Dr. Kaltman says.
Palliative care specialists also are experts in advance-care planning and can help patients navigate advance directives and end-of-life care.
Using personal values as a guide
Dr. Kaltman and other palliative care specialists spend time getting to know their patients so they can better support them in achieving a meaningful quality of life during their illness. They learn about their family, hobbies, career and how they like to spend their free time, plus what gives them strength, hope and joy.
“Asking those kinds of questions and getting to know them as a person really gives you a lot of information about what they value,” she says. “It’s very deeply human.”
That information can help palliative care specialists support patients as they make health care decisions and navigate their lives with an illness.
For example, if a patient can no longer attend her grandson’s football games because her oxygen needs make it hard to get around, the palliative care team would talk with her about what matters most and explore ways to help her reach that goal. That may include finding strategies – such as arranging transportation support or helping her access a motorized scooter – so she can get back to enjoying those moments with her family.
Support may look like prescribing medication to give a patient the energy they need to spend a day at the zoo with their family. Or it could look like finding alternatives to a port or PICC line for a patient who loves to swim, since those vascular-access devices can’t be submerged in water.
“We try to think out of the box sometimes for patients to enjoy life while they’re having to go through all their medical treatments and experiencing a lot of symptoms,” Dr. Kaltman says. “Our No. 1 focus is: How can we support you to live the best life you can while you’re living with this disease?”
Specialized clinics for different diagnoses
UCLA Health offers inpatient and outpatient palliative care, including specialized clinics and providers dedicated to specific diagnoses.
There are cancer-specific palliative medicine clinics in Santa Monica, Ventura, Westlake Village and Westwood, including two dedicated to radiation oncology and one to gynecologic oncology. A neurology-trained palliative medicine physician works with people with ALS and movement disorders; a cardiology-trained palliative medicine physician works with patients in a cardiomyopathy clinic and congenital heart disease clinics; and Dr. Kaltman sees pulmonary patients with COPD or interstitial lung disease.
These specialists are familiar with specific diseases and treatment trajectories, which improves the level of palliative care they’re able to provide, Dr. Kaltman says. Generalist palliative practitioners also are available to treat a range of patients, she adds.
“We have really spread out in an effort to reach the various patient populations at UCLA who have high-risk cancers or end-stage diseases,” she says. “It’s so rewarding to be able to have time to really develop relationships with patients, stand with them when they’re going through hard times, and also seeing them manage their symptoms so they can enjoy life.”
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