Fear and discomfort about death are as natural as death itself. Our brains are wired to resist thinking about our own mortality.
This presents a challenge in palliative care, the field of medicine that attends to quality of life for patients who are seriously ill.
Palliative care can include managing of pain and other physical symptoms resulting from illness or treatment, as well as help with emotional suffering, anxiety, and depression.
Ideally, palliative care specialists aim to understand each patient’s personal values and wishes, and they guide decision making around treatment interventions up to the end of life. They also provide support for attendant loved ones.
“So much of palliative care is about anticipation,” says Andrew Thurston, MD, FAAHPM, medical director of palliative care at UPMC Mercy. “It’s about recognizing patterns in medicine and helping patients and family members think about what’s coming.”
Understanding the way illnesses progress and communicating in an empathetic way are the cornerstones of palliative care. Having these conversations early on in a diagnosis has proven benefits to patient quality of life and mental health.
"Common misperceptions about palliative care — including that it somehow means giving up on life — present major obstacles to the field. "
Palliative care providers can help ease the physical, mental, and spiritual burden serious illness often puts on patients and their caregivers.
But many people think of palliative care as a last resort or an off-ramp after treatment can no longer stave off the effects of a terminal illness. That’s far from how palliative care specialists conceive of the practice and obscures the many benefits of engaging palliative care early on in a serious diagnosis.
Common misperceptions about palliative care — including that it’s only meant for people with cancer or heart disease, or that it somehow means giving up on life — present major obstacles to the field.
If we raise awareness about palliative care, we have the potential to develop more compassionate, patient-centered care that can help alleviate the physical and emotional pain of serious illness.
Busting Misperceptions about Palliative Care
But palliative care can be integrated into the earliest stages of severe illness and treatment.
“When somebody gets a serious diagnosis, there are both medical and psychosocial adjustments to their everyday life,” says Sunita Puri, MD, medical director for palliative care at the Keck Medical Center, University of Southern California, and author of
“That Good Night: Life and Medicine in the Eleventh Hour.”
“Palliative care exists as a corrective to medicine’s general blindspots, about quality of life and the other dimensions of suffering that people endure when they’re very ill.”
Palliative care doesn’t necessarily signal that treatment won’t be effective or that a patient is close to dying.
“There’s a common belief that we exist in this binary, that either we go full force toward the cure of disease, or we just give up,” Puri says. “We need to take a more gentle and nuanced approach to how we balance intervention versus drawing boundaries in the name of compassion and dignity.”
Even the language used to describe the treatment of serious illnesses can fuel this unhelpful way of thinking. “The mentality of saying, ‘I’m a fighter’ can be very toxic because the opposite of that is, you’re a quitter,” Puri says.
But, however miraculous, medicine has its limits, and death, of course, is ultimately inevitable.
The pillars of medical ethics — including allowing patients autonomy, acting in their best interest, and doing no harm — can enter a gray zone when a patient is near death.
"Palliative care is most often confused with hospice, which is a type of palliative care reserved for the last 6 months of life."
Doctors may offer interventions that won’t significantly prolong life, and patients may choose further treatment options simply because they’re offered.
“That’s the trickiest ethical territory that I have traversed over and over again, and I think it puts everybody involved in a really hard position,” Puri says.
Facing the end of life can be difficult, not just for patients and their loved ones, but also for medical professionals, who may consider a death on their watch as a kind of failure.
But disrupting these associations and accepting death as a natural process are crucial to recognizing the value of palliative care as an integral part of a patient’s overall treatment.
Palliative care is most often confused with hospice, which is a type of palliative care reserved for the last 6 months of life. Hospice aims to alleviate suffering after treatment has been discontinued and may be administered in a specialized facility or at a patient’s home.
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Why Palliative Care Should be Introduced Earlier
Both the American Society of Clinical Oncology and the American Heart Association recommend starting palliative care at the diagnosis stage of illness.
And studies have shown that introducing palliative care early improves quality of life and mental health for both patients and their caregivers.
One way to look at a terminal diagnosis is as an opportunity to think about and plan for the end of life. Many people never have that chance or resist taking advantage of it while they can. This planning means examining our deepest values and what we feel makes life worth living.
When palliative care specialists consult with patients at the outset of a diagnosis, they’re able to lead conversations that center a patient’s personal wishes in a calm and considered way.
“If we can sit down and talk about what the future might look like early on, in a controlled environment where emotions aren’t flying, it’s always better than in the chaos and confusion of an intensive care unit,” Thurston says.
Having those early consultations isn’t just better for the patient, who may be less able to express their wishes as their illness progresses. It’s also beneficial for loved ones and medical professionals, too, who may wind up facing questions and decisions down the line that they’re not informed enough to make.
Palliative care specialists can also work to ease physical and emotional suffering and help patients feel more comfortable during the course of illness and treatment. This benefit is lost when they’re only brought in at the last minute.
“Much of the time, I am called toward the end of somebody’s life, and I think that shortchanges the patient and family in numerous ways,” Puri says.
“Often people have suffered with pain and other symptoms that could have been better controlled, and they haven’t been given an opportunity to discuss the hard subjects.”
The pandemic has also placed enormous strain on healthcare systems, with shortages in staffing and equipment and shifting assessments of risk and reward, which includes the realm of palliative care.
More patients may prefer to arrange for in-home hospice, with unrestricted access to loved ones and lower risk of COVID-19 exposure, which in turn frees up hospital resources for the care of other patients.
“If someone doesn’t want to be in the hospital, then we want to help figure out what is the best plan for them based on their goals and values,” Thurston says.
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The Future of Palliative and End-of-Life Care
As in many fields of medicine, advancements in technology are sure to play an important role in the future of palliative care.
Supplementing at-home visits for hospice patients with occasional telehealth check-ins, for example, may continue as pandemic conditions present obstacles to in-person care, Thurston says.
And recent trials of robotic assistants, intended to alleviate loneliness and isolation among elderly and nursing home residents, have shown early signs of promise in the United Kingdom and the Netherlands.
"Key to the future of this field is incorporating palliative care into standard medical school curriculum."
Such technology may prove useful to partly make up for staff shortages — by running simple exercises for patients experiencing early stage dementia, for example — but it’s not intended as a replacement for human caregivers.
Software that could automatically alert doctors and hospitals to a patient who would benefit from a consult with palliative care, though, would be especially useful, both experts say.
Key to the future of this field is incorporating palliative care into standard medical school curriculum and informing patients and families of their right to referral.
Palliative care is heavily reliant on personal contact between professionals and patients.
“So much of our field has to be a human-to-human connection,” Puri says. There’s little substitute for the sort of compassion and understanding that comes from being face to face with another person.
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Death Doulas
Enter death doulas, special caregivers who aim to help people navigate the practical, emotional, and spiritual challenges of facing death. They constitute a growing field adjacent to palliative care. (Death doulas, also known as end-of-life doulas, don’t attend to medical needs.)
The National End-of-Life Doula Alliance, founded in 2018, has some 800 members. Some medical schools, including the University of Vermont, offer certificate programs in the practice.
“We’re going to continue to see a lot of growth,” Thurston says, “in part because there’s such a tremendous need across our country for palliative care-specific involvements, and there’s just not enough of us.”
Currently, many areas outside major urban centers have no access to palliative care at nearby hospitals, Thurston notes.
Takeaway
In addition to practical advancements, there’s the difficult, more personal considerations that each of us could address in our own way.
“Understanding that our lives are brief and beautiful, and that mortality is not something medicine can cure,” Puri says, “that’s the internal work that doctors, patients, and families might consider taking on.”
What You Can Do
- Talk about your wishes for end-of-life care with family and friends, and get your affairs in order, even if you’re young.
- Speak to your loved ones about their end-of-life wishes, and help them get their affairs in order.
- Engage with palliative care early, e.g., as soon as you or your loved one is diagnosed with a serious illness. You can do this by asking your doctor or your loved one’s doctor for a referral to palliative care services.
- Once you have a doctor’s referral, check out the Palliative Care Provider Directory to find a provider in your area.
- If you or your loved one has had a positive experience with palliative care, share it with friends — it can be encouraging and help others understand what it is and what it’s not.
- If you’re a caretaker, be open-minded and listen to the needs of those you care for.