Home Health Care: Home-Based Palliative Care
By Carrie Dennett, MPH, RDN
Today’s Dietitian
Vol. 26 No. 3 P. 8
What is the dietitian’s role?
The CDC estimates that six in 10 Americans are living with at least one chronic disease, and four in 10 have two or more.1 Some of those people will need palliative care to help them find relief from pain and other symptoms of their illness or cope with medical treatment side effects. While palliative care often is provided in hospitals, nursing homes, outpatient palliative care clinics, and certain other specialized facilities, it also can be provided to patients in their homes.2 Home-based care may be essential for patients who are homebound,3 but it also has benefits for ambulatory patients. Research shows that many patients—and family caregivers—prefer home-based palliative care, which can have the added benefit of reducing health care costs and hospital admissions.4,5
Home-based palliative care provided by physicians trained in palliative and hospice medicine is associated with 59% lower odds of dying in the hospital compared with patients without home-based care.5 Even modest investments in home palliative and hospice care improve the end-of-life experience of community-dwelling older adults by reducing the odds of death occurring in an acute care hospital,6 and home-based palliative care at end-of-life increases the likelihood that cancer patients will die in their preferred environment—usually at home.7,8 But what’s the dietitian’s role in this care?
The RD’s Role
“Dietitians play a crucial role in at-home palliative care by addressing the nutritional needs of individuals with life-limiting illnesses,” says Theresa Gentile, MS, RDN, CDN, a Brooklyn, New York-based spokesperson for the Academy of Nutrition and Dietetics (the Academy), with expertise in home enteral nutrition. “Their primary goal is to enhance the quality of life for patients and support their overall well-being. Whether at home or in a facility, dietitians develop individualized nutrition plans that take into account the patient’s specific medical condition, treatment goals, and personal preferences. RDs manage symptoms such as loss of appetite, nausea, and taste changes; make modifications to textures or consistencies; and may recommend specialized nutritional supplements to improve the patient’s overall comfort and wishes. RDs also ensure proper hydration and will collaborate with the health care team to make adjustments as needed,” she says.
Jessica Sylvester, MS, RD, LDN, CNSC, CDCES, a Boca Raton, Florida-based clinical dietitian, nutrition practice owner, and spokesperson for the Academy, says the role of dietitians may vary based on whether they work for a larger company or in private practice. “When working in a larger company, there are sometimes restrictions to what dietitians can do. You need permission to change your diet order,” she says. However, in her private practice, she simply informs the other clinicians as a courtesy if she changes an oral diet order; if she changes a tube feed order, she will still need the patient’s doctor to write a prescription for that order, because dietitians aren’t allowed to do that themselves. “I don’t need their permission [to change diet or tube feed orders], but it should always be a team approach. I always have my patients sign forms that give me access to or the ability to speak with their doctors.”
Gentile says that with home-based palliative care, dietitians may be playing a more intimate role with patients and families and may need to adjust recommendations based on the family’s, or home health aide’s, ability to cook certain foods or provide alternate means of nutrition. “Dietitians can also help patients with logistical solutions to food procurement, storage, and preparation by helping families determine how, when, and where to purchase foods for the patient,” she says.
Sylvester adds that dietitians working in palliative care must consider not just nutrients, but mode of intake. “Are they on an oral diet, are they tube fed, or are they on parenteral nutrition? The biggest concerns are malnutrition and swallow abilities,” she says. “We want to get them the nutrients they need, limit the nutrients they can’t have, and we want to make sure they’re getting it in the safest way possible.”
Transition From Palliative to Hospice Care
Distinct from hospice services, which provide comfort-focused end-of-life care, home-based palliative care can be provided at any time.2 Common illnesses treated by palliative care include heart failure, COPD, cancer, and dementia. Older adults living with one or more chronic illnesses may benefit from palliative care—which can be used for as long as necessary and doesn’t depend on whether a condition is being treated or can be cured—long before they’d need hospice care. Hospice programs focus on comfort, not curative, care for patients who have six months or less to live, so to enter hospice, a patient must be willing to give up treatment.2
“If a patient were to shift from at-home palliative care to at-home hospice, the dietitian’s role would be more supportive, rather than providing curative or long-preserving treatments,” Gentile says. “In hospice care, the emphasis is on maintaining comfort and preventing unnecessary interventions. Dietitians work closely with patients and families to create nutrition plans that align with the patient’s preferences and needs, even if they involve less aggressive nutritional interventions.”
Sylvester says that if patients are receiving hospice care, she’d only encourage safe pleasure feeding. “Can they swallow? If they can, then follow their lead. If they’re thirsty, give them water. If they want a Kit Kat bar, give them a Kit Kat bar. If they’re hungry, ask them what they want and give them what they want.” She says that with hospice care, the dietitian and team also need to consider the ethics of feeding.9 “I tell my colleagues, ‘The patient isn’t dying because he’s not eating, he’s not eating because he’s dying.’ We really have to allow the hospice patient to decide if he or she wants to eat. Encouraging oral intake and hydration robs the patient of experiencing euphoria and no pain during their last moments.”10,11
Meeting Future Demand
As the population ages, will there be more of a demand for home-based palliative care, whether due to the wishes of patients or caregivers or because it may reduce hospital stays? Gentile thinks there will be.
“I’ve seen this with many long-term enterally fed patients (and my own grandparents). People are caring for their aging parents and their grandchildren, often at the same time,” Gentile says. “Many individuals prefer to receive care in the comfort of their homes, surrounded by familiar surroundings and the support of their families. Home-based palliative care aligns with the desire for a more personalized and patient-centered approach to end-of-life care.” She says that technological advancements such as telehealth have made at-home palliative care easier by improving communication between health care providers and patients and allowing for timely interventions.
Sylvester thinks there will be more of a need for at-home palliative care but is unsure if there will be more demand—even though there should be. “Our food system is changing, and there’s evidence that people are experiencing more chronic illness, so we will have more need for palliative care. But people are still so unaware of the many specialties of RDs that I don’t know if they know that we’re an option, let alone a necessity.”
Both agree there aren’t enough dietitians working in this area. Gentile says this may be influenced by the overall health care infrastructure in a given region. In other words, areas with well-established home care programs may have better access to dietitians who can provide at-home palliative care.
Sylvester says she offers at-home palliative care because she has a private practice and relationships with physicians in the area who will refer to her. “One of the problems with being discharged from the hospital is that there appears to be no continuation of nutrition care, no bridge from in-patient to outpatient nutrition counseling,” she says regarding her observations from when she worked in a hospital ICU. “The hospital dietitians weren’t allowed to say, ‘Hey, I have a private practice,’ and I get that, for legal reasons. The patients were left on their own to go find a dietitian.”
Gentile says funding and training of dietitians who specialize in palliative care are essential, adding that recognition of the important role they play is key to ensuring adequate staffing. “I hope, as awareness of the nutritional needs of individuals in palliative care grows, there may be increased efforts to incorporate dietitians into home care teams,” she says.
— Carrie Dennett, MPH, RDN, is the nutrition columnist for The Seattle Times, owner of Nutrition By Carrie, and author of Healthy for Your Life: A Non-Diet Approach to Optimal Well-Being.
References
1. Chronic diseases in America. National Center for Chronic Disease Prevention and Health Promotion website. https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm. Updated December 13, 2022.
2. What are palliative care and hospice care? NIH National Institute on Aging website. https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care. Updated May 14, 2021.
3. Roberts B, Robertson M, Ojukwu EI, Wu DS. Home based palliative care: known benefits and future directions. Curr Geriatr Rep. 2021;10(4):141-147.
4. Brian Cassel J, Kerr KM, McClish DK, et al. Effect of a home-based palliative care program on healthcare use and costs. J Am Geriatr Soc. 2016;64(11):2288-2295.
5. Ankuda CK, Meier DE. Predictors of reliably high-value end-of-life care. Curr Opin Support Palliat Care. 2018;12(4):460-465.
6. Isenberg SR, Tanuseputro P, Spruin S, et al. Cost-effectiveness of investment in end-of-life home care to enable death in community settings. Med Care. 2020;58(8):665-673.
7. Cai J, Zhang L, Guerriere D, Coyte PC. Congruence between preferred and actual place of death for those in receipt of home-based palliative care. J Palliat Med. 2020;23(11):1460-1467.
8. McEwen R, Asada Y, Burge F, Lawson B. Associations between home death and the use and type of care at home. J Palliat Care. 2018;33(1):26-31.
9. Fine RL. Ethical issues in artificial nutrition and hydration. Nutr Clin Pract. 2006;21(2):118-125.
10. Bennett JA. Dehydration: hazards and benefits. Geriatr Nurs. 2000;21(2):84-88.
11. Pasman HR, Onwuteaka-Philipsen BD, Kriegsman DM, Ooms ME, Ribbe MW, van der Wal G . Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. Arch Intern Med. 2005;165(15):1729-1735.