Explore this issue:October 2016
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In fact, according to the 2015 Palliative Care Report Card from the Center to Advance Palliative Care (CAPC), 67 percent of hospitals with 50 or more beds had a designated palliative care program.1
While core palliative care skills can be performed by frontline clinicians including hospitalists, specialty palliative care consults are the ones who are called in for complicated cases. The Hospitalist asked several palliative care experts for advice on how to clarify definitions, distinctions, and roles. This is what they told us:
Palliative care is not synonymous with end-of-life care.
Palliative care advocates call this the biggest misconception they struggle to overcome, with the potential to inhibit its contributions to patient care in the hospital. Palliative care, they say, is for any patient with a serious illness who is struggling to cope with the fallout from that illness in their lives.
“Our biggest impact can come earlier in the illness,” says Jeanie Youngwerth, MD, director of the University of Colorado Hospital’s Palliative Care Consult Service in Aurora. “We help people do the best they can for as long as they can. If you’re even considering a palliative-care consult, then do it sooner rather than later.”
Palliative care can offer more than just help with difficult conversations, adds Daniel Fischberg, MD, PhD, FAAHPM, medical director of the Pain and Palliative Care Department at The Queen’s Medical Center in Honolulu. For example, the palliative-care team can work with patients to clarify their expectations and goals for care, plan for what comes next, and address troubling symptoms—whether physical or emotional, Dr. Fischberg says.
“We can really help patients and families who are facing unique and challenging needs,” he says.
The experts also say that palliative care is not synonymous with hospice care, which is a comprehensive service that provides specialized terminal care for patients with a prognosis of six months or fewer to live. Both, however, share many of the same principles and techniques of symptom management and psycho-social-spiritual support. But some patients and families may associate a palliative-care referral with hospice care or have other misconceptions and fears about it. Hospitalists are challenged to provide a consistent message clarifying that palliative care can be helpful for seriously ill patients regardless of prognosis or other medical treatments they’re receiving.
“It’s human nature not to want to deal with our mortality, and any word that gets associated with death and dying can turn people off,” says Joseph Rotella, MD, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM). “The best way to prevent this is to define it in terms of patient and family needs: ‘Let’s bring in our comfort specialists.’ Doctors should not apologize when referring to a service that has proven its value. We should be happy to recommend it often and early.”
Patients with serious illness can benefit from palliative care.
CAPC defines palliative care as “specialized medical care for people with serious illnesses.” It focuses on providing patients with relief from the symptoms and stress of a serious illness, regardless of their diagnosis, at any age and at any stage of a serious illness. This service is provided by a specially trained interdisciplinary palliative-care team of doctors, nurses, and other specialists who work together with patients’ other doctors. Their goal is to improve quality of life for both patients and their families with an extra layer of support.
Palliative care is also a medical specialty that involves specialty training, including year-long hospice and palliative medicine (HPM) fellowships now offered at 112 sites accredited by the Accreditation Council for Graduate Medical Education. Subspecialty board certification is also available through 10 collaborating medical specialty boards within the American Board of Medical Specialties as well as by the American Osteopathic Association. Palliative-care programs are now certified by The Joint Commission, with similar recognition under development by the Community Health Accreditation Partner.
Palliative care is intended for patients facing challenges.
Palliative care is intended for patients who might be expected to face stresses and challenges in any area of their lives as a result of serious illness. This may include, for example, patients who experience frequent emergency department visits, hospital readmissions, or prolonged ICU stays, as well as cancer patients who are admitted to the hospital solely to address out-of-control symptoms resulting from their disease and its treatment.
“We can help with the burdens of any challenging symptoms,” Dr. Fischberg says.
Other examples of appropriate palliative-care referrals are when next steps for patients’ treatment are not clear, when there are questions about patients’ real goals of care, and when unmet needs such as unrelieved symptoms have put their families in a state of distress, whether physical, emotional, social, or spiritual. Patients may need guidance about weighing their care options.
Palliative care is also available for children and their families.
The philosophy and organization of palliative care for delivering compassionate care for children with chronic, complex, or life-threatening conditions are much the same as for adults. In 2013, the American Academy of Pediatrics issued a Pediatric Palliative Care and Hospice Care policy statement,2 which outlined core commitments in such areas as respecting and partnering with patients and families and pursuing care that is high-quality, readily accessible, and equitable.
As with adults, a referral for palliative care typically is most helpful for the more complex cases, says Joanne Wolfe, MD, MPH, director of Pediatric Palliative Care at Boston Children’s Hospital. The palliative care team can offer emotional support to the parents of children with complex illnesses and help them understand confusing treatment options. The children, too, need a sounding board.
“If I were teaching a group of hospitalists, I would emphasize foundational principles of palliative care, starting with relationship and understanding patients’ and families’ goals of care,” Dr. Wolfe says. If the family is struggling to cope with the illness and the hospitalist doesn’t have good answers, that’s when to call palliative care, she adds.
Palliative care’s role is not to talk patients and their families out of treatments.
The palliative-care team tries to enter cases without an agenda, Dr. Fischberg says, rather than aiming to get patients to stop treatments or agree to a do-not-resuscitate (DNR) order.
“We’re interested in what the hospitalist thinks about what best care for this patient looks like but also in eliciting the patient’s values and preferences,” he says.
Palliative-care professionals are skilled at delicately communicating bad news and helping patients and families clarify what their goals of care really are, says Robert Crook, MD, FACP, associate medical director of Mount Carmel Hospice and Palliative Care in Columbus, Ohio.
“It’s more about helping to improve communication between the primary-care team and the patient and family—not talking somebody out of something but helping them understand each other better,” Dr. Crook says.
Palliative care can reduce costs of care on average, but it does not achieve this by rationing care or denying treatments.
“We’re not there to cut costs or to get patients discharged sooner or to steer them away from costly treatments,” explains Dr. Rotella. “The last thing a palliative-care team wants is to be viewed as a care rationer. But if the patient understands what’s really going on, they often won’t want treatments that don’t help. So, in that way, we are part of the solution.”
Dr. Rotella calls this cost-effectiveness a side effect of palliative care, when patients are empowered to make decisions about their own care. “That’s where you achieve the triple aim,” he says. “They feel better about it because they are in the driver’s seat. If a patient wants a treatment consistent with their values, we will advocate for it.”
One study found that patients at eight U.S. hospitals who received palliative care incurred significantly lower hospital costs than a matched group receiving usual care, with an average reduction in direct hospital costs of almost $1,700 for patients discharged alive and almost $5,000 per admission for patients who died in the hospital.3 Another study found that early palliative care interventions for cancer patients led to significant improvements in both quality of life and mood compared with patients receiving standard care, with less cost and fewer aggressive treatments at the end of life but longer survival.4
One of the main tools of the palliative care team is the family meeting.
Family meetings are scheduled to allow as many family members as possible to attend, and the primary-care team and relevant specialists typically are also invited. Many palliative-care teams use a standardized format that involves introductions, clarification of each participant’s understanding of the patient’s prognosis, and an effort to reconcile the patient’s hopes and values with medical realities and possibilities, Dr. Fischberg explains.
“That is such a critical component of our care, where we make sure the patient and family are fully informed and foster shared decision making that results in patients being more comfortable with care that better matches what they want,” says Dr. Rotella.
The palliative-care team typically becomes involved via a consultation request from a patient’s attending physician.
“A big part of our job is doing our homework,” Dr. Youngwerth says. “We’ll talk to the team about what’s going on. We want to get as much information as possible about the patient, about prognosis, about the perspectives of people caring for them. Don’t be surprised if the palliative-care team contacts you to get your input on the prognosis and other medical details in order to best inform their discussion with the patient and family.”
Then the palliative-care team will follow consult protocol in reporting back to the primary medical team.
Palliative-care teams can assist busy hospitalists with difficult patient conversations.
“When I’m on the hospitalist service, I’ll pull in the palliative-care team,” Dr. Youngwerth explains. “It’s not that I don’t have the skills; I don’t have the time.”
Conversations aimed at clarifying goals of care can take 90 minutes or more, but the palliative-care team will take as much time as needed to achieve clarification.
It’s important that hospitalists remain involved in these cases, says Christian Sinclair, MD, assistant professor in the division of palliative medicine at the University of Kansas Medical Center in Kansas City and president-elect of AAHPM.
“Just because you have access to palliative-care services, don’t miss the chance to enhance your own communication skills and your ability to address these issues head on,” Dr. Sinclair says.
American Academy of Hospice and Palliative Medicine is a participant in Choosing Wisely.
The Choosing Wisely program, initiated by the American Board of Internal Medicine Foundation, invites medical societies to identify five treatments that should be questioned by physicians and patients based on lack of supporting evidence in the research base. The Society of Hospital Medicine is also a participant in this initiative.
For AAHPM, one of its recommendations was: “Don’t delay palliative care for a patient with serious illness who has a physical, psychological, social, or spiritual distress because they are pursuing disease-directed treatment.” Other Choosing Wisely suggestions include not recommending feeding tubes for patients with advanced dementia, not leaving implantable cardioverter defibrillators (ICDs) activated when these are not consistent with patient/family goals of care, and not recommending more than a single fraction of palliative radiation for an uncomplicated painful bone metastasis.
Different palliative-care programs provide different services.
It is important for hospitalists to learn their local palliative-care programs and what they emphasize and are able to offer—or not, says Dr. Sinclair.
“There are so many different models,” he says. “Spend some time reaching out to them, outside of actual consults, and find out what their comfort level is on various issues. Hospitalists and palliative-care teams should get to know each other better.”
Access to palliative care and the comprehensiveness of the team and services can vary between hospitals, while access to community-based palliative care outside of the hospital is even more variable.
“Palliative-care teams often have a better sense of our partners in the community and access to community-based palliative care,” Dr. Fischberg says.
- Morrison RS, Meier DE. America’s Care of Serious Illness: 2015 State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals. New York, NY: Center to Advance Palliative Care; 2015.
- American Academy of Pediatrics. Policy statement: pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatr. 2013;132(5):966-972.
- Morrison RS, Penrod JD, Cassel JB, et al. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med. 2008;168(16):1783-1790.
- Temel JS, Greer JA, Muzikansky et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.