By Liz Seegert

The terms palliative and hospice care are often used interchangeably, but they’re not the same. While all hospice care includes palliative care, palliative care is not limited to the end of someone’s life.

Both palliative care and hospice care provide comfort, however, palliative care can begin at diagnosis, and at the same time as treatment, according to the National Library of Medicine. Hospice, care begins after treatment of the disease and is stopped when it is clear that the person is not going to survive the illness.

The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

Palliative care uses an interdisciplinary, holistic, team-based approach that works with a patient’s other health providers to address physical, emotional, social and spiritual issues patients may face during their illness.  Care focuses on relieving symptoms and stress of a serious illness, such as cancer, congestive heart failure, Parkinson’s disease or HIV/AIDS, such as:

• pain
• depression
• shortness of breath
• fatigue
• constipation
• nausea
• loss of appetite
• difficulty sleeping
• anxiety

According to the Center to Advance Palliative Care (CAPC):

• Approximately 90 million Americans are living with serious illness, and this number is expected to more than double over the next 25 years with the aging of the baby boomers.
• An estimated 6,000,000 people in the United States could benefit from palliative care.
• More than two-thirds (68 percent) of Medicare costs are related to people with four or more chronic conditions—the typical palliative care patient.
• About 6 in 10 (61 percent) of all hospitals with more than 50 or more beds have a palliative care team.
• If palliative care was fully integrated into U.S. hospitals, total savings could amount to $6 billion per year.
• Worldwide, only about 14 percent of those needing palliative care receive it, according to World Health Organization data.
  • Disparities are greatest in middle- and low-income countries.
  • Up to 40 million people could benefit from this supportive care annually; some 78 percent are in middle and low-income nations.

Palliative care is appropriate at any age and at any stage during a serious illness, and can be provided along with curative treatment, according to the National Institute on Aging Care is provided wherever the patient may be — home, hospital, clinic or other specialized location.

Medicare, Medicaid, the Department of Veteran’s Affairs and most private insurance pay for some elements this care. But as this Health Affairs article noted, reimbursement is often intertwined with hospice, and is lower than for procedural types of services. Yet, the authors pointed out that “A landmark randomized controlled trial in 2010 found that palliative care improved quality of life, increased survival, and reduced costs for patients with stage 4 lung cancer. If someone developed a drug that did this, that person would be a billionaire.”

How do you know when someone is ready for palliative care?

The Canadian Virtual Hospice points out a decision to begin palliative care involves many factors. It should include a discussion with the health care team, which can provide information about options and available support.

The organization suggests that patients and families ask the following questions to help determine when palliative care becomes the primary focus:

• What are my (or my loved one’s) treatment options?

• What matters to the person living with the illness?
• What options are available for palliative care or symptom control?
• What is the nature and the course of the illness?

Growing but barriers remain

According to the Center to Advance Palliative Care (CAPC), the percentage of hospitals with 50 or more beds with a palliative care program has tripled over the past 16 years, from 25 percent to 75 percent. In 2000, just 658 hospitals reported a palliative care program. In 2016, it was 1,831. Mark Taylor wrote more about this growth here. Currently, CAPC’s National Palliative Care Registry counts 1,287 participating programs and more than 2.5 million initial patient consultations.

Despite increased acceptance and implementation of palliative care services, barriers still remain. Availability of these services vary by geography, hospital size, and tax status. Even in hospitals that report palliative care services, only a small fraction of the patients who could benefit from it actually receive some palliative care. Many programs remain understaffed and under-resourced to reach all patients in need, according to CAPC.

According to a 2017 article in the journal Palliative Care, “nearly one-third of U.S. hospitals with more than 50 beds do not have any palliative care service.”

The author calls for a reframing of the language of palliative care, as its benefits are increasingly recognized: “Basic skills required to deliver a palliative approach to care need to be provided for all staff in health care settings where people with chronic illnesses may reside, particularly residential care homes and general hospitals.”

Not surprisingly, disparities in who gets this important care approach still exist, according to a study of more than 600,000 patients at 1500 hospitals across the U.S., Lisa Rappaport wrote for Reuters.

When researchers compared palliative care access at the 150 hospitals with the most nonwhite patients to what happened elsewhere, that group was “33 percent less likely to receive palliative care, regardless of race or ethnicity,” Rappaport reported.

Rural residents also struggle with access to palliative care. The University of Alabama, Birmingham is conducting a study to determine whether a culturally-based palliative care telehealth program eases suffering and reduces the burden on family caregivers.

California is one state that has implemented a broader approach to palliative care. It’s the first large scale attempt to extend this care to Medicare patients, mandating home-based palliative care services, the Washington Post reported.

In addition to improving quality of life for patients and families, timely palliative care can help hospitals save money. So why isn’t every facility offering it, or partnering with care teams? This report from Pew Charitable Trusts looked at several reasons for the gap.

Story ideas

• How many hospitals and nursing homes in your community have an in-house palliative care program? What’s working, and where do they fall short?
• How are local organizations and providers reaching out to underserved communities, whether they’re predominately minority, rural, low income, or a combination?
• What do patients and families know about palliative care and how it differs from hospice? Have they or a loved one experienced this type of care?
• Are other states following California’s lead in expanding home-based palliative care services to Medicaid patients? What are the hurdles?
• Talk with local palliative care experts. Are they concerned about managing pain because of the opioid crisis, or issues with polypharmacy among older adults when it comes to treating symptoms like depression or anxiety?

Resources

• The National Hospice and Palliative Care Organization (NHPCO), represents hospice and palliative care programs and professionals in the United States. Their consumer website, caringinfo.org has information on end-of-life issues including caregiving, advance care planning, pain, grief, hospice, palliative care and financial issues. State-specific advance directives and consumer resources are available. Contact: Jon Radulovic, vice president, communications, (703) 837-3139.
• The Coalition to Transform Advanced Care (C-TAC). Advocates for comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values Contact: Stephen Waldron, communications manager, SWaldron@theCTAC.org.
• America’s State of Serious Illness: A 2015 report from CAPC, with state-by-state rankings on access to hospital-based palliative care. How does your state stack up? What has changed, if anything, since this report what issued?
• This 2016 article in the Journal of palliative Medicine takes a deeper dive into access and use of palliative medicine in U.S. hospitals.

Experts

• VJ Periakoyal, M.D., associate professor of medicine, Stanford University School of Medicine; director of the Stanford Palliative Care Education & Training Program and the Stanford Hospice & Palliative Medicine Fellowship Program. Contact: periyakoil@stanford.edu.
• Maria T. Carney, M.D., chief, geriatric and palliative medicine at Northwell Health, New York. Contact: mcarney@nshs.edu.
• Lori Bishop, MHA, BSN, RN, CHPN, vice president of palliative and advanced care, National Hospice and Palliative Care Organization. Contact: (703) 837-1500
• Sally Welsh, MSN, RN, CEO of the Hospice and Palliative Nurses Association. Contact: hpna@hpna.org or (412)787-9301.
• Susan L. Mitchell, M.D., M.P.H., director of palliative care research and co-director of the Marcus Institute for Aging Research’s Interventional Studies in Aging Center at Hebrew Senior Life in Boston, Mass. Contact: smitchell@hsl.harvard.edu or (617) 971-5326.