Palliative Care: Live Better for Longer with Serious Illness

Preparing for a Good End (Part 6)

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Follow the "Preparing for a Good End" series here.

In this series, we'll examine ways of making meaning in the face of death, offering tools founded in traditional wisdom and scientific evidence to help our readers live well right to the very end. 

Palliative care is a widely misunderstood medical specialty, even among health care workers. Despite what many people think, it isn't end-of-life care, according to a leading U.S. palliative care physician, Dr. Steve Pantilat.

In his book "Life After the Diagnosis," Dr. Pantilat describes the specialty: “Palliative care is a distinct medical specialty that helps seriously ill people live as well as possible for as long as possible and helps relieve their pain, stress, and other symptoms.”

Take my father-in-law, Richard, for example. Starting at age 50, he journeyed for 30 years through heart disease, prostate cancer, colon cancer, and finally, a debilitating stroke.

Ultimately, he endured three heart attacks, coronary artery bypass surgery, pacemaker and defibrillator insertion, two colectomies (partial colon removal), PEG tube insertion to receive feedings through his abdomen, two knee surgeries, and a hip replacement after a fall.

A member of the silent generation, he complained little and rarely expected more from life.

However, underneath his stoic nature lay an undercurrent of spiritual unrest. He plodded along quietly with no one to talk with about his thoughts on dying, broken relationships, or ways to find inner peace and contentment with life’s regrets. Likely afraid of death, he agreed to every possible intervention, even to the point of misery and a debilitating stroke three days after colon surgery in his early 80s.

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Certainly, the “golden years” weren’t so golden, something Richard accepted as an irreversible reality. I've imagined how the last quarter of his life could have been with a palliative care physician to consult.

Palliative Care Provides Support for Living and Dying Well 

Palliative care teams swoop in as an extra layer of physical, relational, emotional, and spiritual support for patients facing serious illness, such as Richard, at any stage. They don't just help patients die well. They help them live well from the beginning to the end of their disease journey.

In her book "Living Well with a Serious Illness," palliative care expert and advocate Robin Bennett Kanarek writes, “The root of the word palliative comes from Latin and means ‘to cloak,’” an image of soothing support.

Palliative care’s primary goal isn’t convincing patients to stop treatment and transition to hospice. Instead, through honest, open, and unhurried conversations, they help patients make treatment decisions in alignment with how they want to live, even if that means fighting off death with every available treatment.

Why We Need a Specialist for Extra Support

Palliative care grew from the global rise in chronic illness as the human lifespan began lengthening dramatically after the early 1900s. A few generations ago, people died quickly from disease, illness, and trauma without adequate medical technology.

Today, medical advances allow people to live longer with serious illnesses such as cancer, dementia, ALS, Parkinson’s, and heart, lung, liver, and kidney disease, to name a few. Still, while many live longer, they may not live better. Chronic illness can be debilitating and highly stressful, reducing the quality of life for many seriously ill patients.

Unlike other providers, palliative care experts train rigorously to care emotionally, spiritually, and physically for patients—and their loved ones—with distressing long-term diagnoses. Most palliative care patients eventually die from their disease, but often after years of living with the condition and receiving disease-focused treatment.

Teams providing supportive care, another term for palliative care, specialize in walking the entire journey with patients and their loved ones up through their final days when they transition to hospice. Hospice is indeed end-of-life care, but palliative care as a whole offers a wider scope.

Relieving the Suffering of Overtreatment

With a health care system that excels at extending lifetimes, patients are often motivated and encouraged to try every treatment up to their dying day, no matter how much misery results. Ultimately, they receive little guidance on living well and making peace with death when it approaches.

This avoidance from providers and patients alike fuels endless rounds of treatments, adding “suffering in hope of relieving more suffering,” Dr. Pantilat said.

A 2022 study published in JAMA Surgery found that 1 in 7 older adults living in retirement and nursing communities died within one year of major surgery. That rate rose to 40 percent with emergency surgery. Frail patients and those with dementia were the most likely to die within a year of the procedure.

Richard is a telling example. Three days after surgery to remove colon cancer, he suffered a stroke, which is a leading risk for heart disease patients who stop blood thinners before surgery. His stroke left him unable to swallow safely, leading to a following procedure to insert a PEG tube for regular feedings. He couldn't eat or drink for a year.

Cancer presents an even starker challenge. According to a 2022 study published in AINS, a German medical journal, up to 50 percent of cancer patients die within four weeks of chemotherapy, leaving them too sick and frail to prepare for death, reconcile with loved ones, and find peace in their final days.

“Of note,” the study’s authors wrote, “treating physicians often overestimate the prognosis of patients,” making recommendations and decisions difficult. Compounding the problem further, providers frequently fear discussing raw truths with patients.

Another example of what the study found, my mother-in-law, Priscilla, lived for barely one month after her first round of chemotherapy. She spent a mere two days at home after the treatment and returned to the hospital, where she died a month later. My husband recalls that her doctor offered no alternative and little discussion about the miseries of chemotherapy.

The Earlier the Better

The benefits of palliative care are impressive, including helping patients live better for longer, offering precious time with loved ones. The key is to engage in supportive care earlier rather than later.

“To have a meaningful effect on patients' quality of life and end-of-life care, palliative care services must be provided earlier in the course of the disease,” the study’s authors wrote.

Supportive care experts, such as Dr. Pantilat, say “early” means “at the time of diagnosis.”

Many studies agree. Most patients wait to engage a palliative physician until their final weeks of life, when they consider hospice. Data suggest that this delay reduces a patient’s chances of living better and possibly longer. Early care significantly increases the likelihood that patients receive care that meets their goals, undergo less futile and distressing treatment, and stay out of the hospital.

Earlier support also helps loved ones process and resolve their sorrow better when a patient's disease worsens, reducing prolonged, complicated grief.

Ask For a Palliative Care Consult

Unlike hospice, full palliative care services aren't available everywhere yet. Still, Dr. Pantilat urges those facing serious illness to ask for a palliative care consult, even if their physician insists that they “don’t need it yet.”

Ms. Kanarek, who suffered with her son, David, during his five-year battle with leukemia, agrees.

“If you don’t know what palliative care is, you aren’t going to ask for it, and that means you won’t get it," she said. "This is a well-established fact, and one that I know from personal experience.”

At age 15, David died before palliative care was available.

For those with a serious illness, palliative care could be a lifesaver—breathing life into whatever time one has left.

Dr. Pantilat told his students at the University of California, “If palliative care were a pill, every doctor would prescribe it and every seriously ill patient would take it.”

Read the entire "Preparing for a Good End" series here.