How do you determine what your patient needs?

David Linden*, an 84-year-old man with multiple comorbidities (chronic obstructive pulmonary disease, heart failure, atrial fibrillation, and hypertension), has been hospitalized twice in the past 3 months for heart failure exacerbation. During the second admission, Mr. Linden tells his nurse that he’s struggling to cope with his illness. She shares this information with Mr. Linden’s provider, who consults with the inpatient palliative care team to address goals of care and evaluate suspected psychosocial distress.

As life expectancy in the United States increases, so will the number of individuals with serious illnesses and multiple chronic conditions. Ultimately, this will lead to lengthier periods of medical management to maintain quality of life, increased demand for healthcare services, and a consequential increase in spending. A meta-analysis by May and colleagues found that referral of adults with serious illness for palliative care consultation may improve quality of life and reduce hospitalization costs. (See Facts & figures.)

What is palliative care?

The Center for the Advancement of Palliative Care defines palliative care as specialized medical care for people living with serious illness. Palliative care specialists take an interdisciplinary team approach, which focuses on improving quality of life by minimizing the physical, emotional, and spiritual burdens associated with serious illness across the disease trajectory from diagnosis to death. Palliative care teams provide a layer of support, facilitate communication, and coordinate care for patients and their families.

Diverging from the traditional disease-centric medical model, palliative care teams offer holistic care focused on the patient–family unit’s experience of illness. The team prioritizes patient understanding of their diagnosis and prognosis, available treatment options, and benefits and burdens of those options. This approach helps patients feel empowered to choose therapies (ranging from curative to comfort) that best support their goals and affirm their personal values and beliefs.

Palliative care team

Palliative care teams include physicians, advanced practice providers, nurses, pharmacists, social workers, chaplains, music therapists, and other complementary therapy disciplines specific to an organization’s needs. Although not all communities have access to palliative care services, specialty palliative care provided across care settings includes hospitals, long-term care, community clinics, and home.

Providers should integrate palliative care needs assessments into serious illness management as early as diagnosis and extend it throughout the disease trajectory. Palliative care teams can assist with advance care planning, goals of care discussions, complex pain and symptom management, emotional and spiritual support, caregiver support, and coordination of care across settings. Nurses should understand the multifaceted role that palliative care teams play in serious illness management. When nurses recognize a patient has palliative care needs, they can advocate for access to those services.

David Linden’s care team confirms the existence of an advance directive that lists his wife, Katherine, as healthcare proxy. During the goals of care conversation, Mr. Linden describes his frustration with the recent readmissions despite his adherence with prescribed therapies. He perceives his quality of life as good as long as he has periods of rest. Mr. Linden takes walks with his dog for exercise, plays organ for his community church, takes day trips with friends, volunteers at the community theater, spends time with his family, and is learning to master the guitar.

The palliative care social worker completes a psychosocial assessment, which reveals indicators of situational anxiety related to recent admissions and a fear of future decline. Mr. Linden and the team’s music therapist combine guitar music and personalized lyrics to create a short song that helps him express feelings about his situation.

The palliative care nurse practitioner (NP) consults with Gabriela, the handler of the hospital facility dog, Jack. Gabriela and Jack visit Mr. Linden to promote increased relaxation, decreased anxiety, and situational coping. Gabriela, a licensed social worker who’s received handler team training via a national service dog organization, facilitates conversation and provides therapeutic listening so Mr. Linden can explore his feelings about his medical conditions, perceived limitations, and future aspirations. Mr. Linden reminisces about his life, his family, and his dog while petting Jack, who lays at his side and applies gentle pressure or grounding. Jack maintains slow breathing and eye contact with Mr. Linden, which provides ad­ditional calming.

During the visit, Mr. Linden reports that his 12-year-old great-grandson, Little David, is exhibiting stress (poor sleep and misbehavior at school) because of the hospitalizations. Gabriela notifies the NP of Mr. Linden’s concern. In response, the NP consults the certified child life specialist, who helps psychologically prepare the child for a bedside visit with his great-grandfather and provides the parents with community-based support resources.

During a spiritual assessment, the palliative care team learns that Mr. Linden draws strength from his personal faith-based beliefs but is experiencing some existential distress. The chaplain communicates this to the palliative care provider. Mr. Linden responds well to daily journaling and continued music therapy visits to explore his existential distress and manage anxiety.

At discharge, the team schedules weekly telehealth visits with the music therapist. At monthly telehealth visits, the palliative care nurse practitioner monitors Mr. Linden’s symptoms and psychosocial needs.

What is hospice care?

Specialized hospice care focuses on comfort and quality of life in individuals with a serious illness who are nearing the end of life. Hospice care (a benefit under the hospital insurance program if a patient has Medicare Part A) is warranted when a provider believes that a patient with a terminal illness has 6 months or less to live (assuming the illness runs its normal course). The hospice medical director, in collaboration with the patient’s provider, determines continued eligibility of hospice recertification episodes based on life expectancy of 6 months or less.

Rather than providing curative treatment, hospice providers focus on ensuring comfort at the end of life. Unfortunately, despite its benefit for patients and family members, referrals to hospice frequently occur late in the course of the illness, resulting in shorter periods of care. In 2019, according to Kirk and colleagues, over 50% of patients were enrolled in hospice for 18 days or less, perhaps due to a reluctance to stop curative treatments.

Hospice care team

Similar to palliative care, hospice takes a holistic approach. An interdisciplinary team addresses the physical, psychosocial, and spiritual needs of the patient and family with a focus on symptom management and individual preferences. The team—which typically includes providers, nurses, aides, social workers, chaplains, therapists, and volunteers—provides coordination of care via a planning process. The interdisciplinary team develops an individualized plan of care (POC). This holistic POC reflects the goals of the patient and family, includes necessary services for managing the patient’s illness, and incorporates patient needs identified in the initial assessment. Services include pain and symptom management, caregiver respite if needed, inpatient care if the individual’s symptoms can’t be managed at home, and grief and bereavement counseling. Hospice grief and counseling services extend beyond the patient to the family and are provided for at least 13 months after the individual’s death.

Referrals to hospice are appropriate when the goals of care shift from the pursuit of curative therapies to comfort care. Barriers to hospice referrals include prognosis uncertainty by the provider and denial of a terminal illness by the patient or family. Some providers may hesitate to discuss hospice care too early or lack training in serious/terminal illness conversations. In addition, patients and families may misunderstand the premise behind end-of-life care or may wish to continue curative treatment.

Providers should initiate discussions of goals (including advance care planning) with patients and families at the diagnosis of a serious illness. Because nurses spend more time with patients than do other healthcare pro­viders, they should participate in these difficult conversations. Some patients and families may feel more comfortable asking questions of a nurse they’ve developed a trusting relationship with after the provider presents hospice information.

What’s the nurse’s role?

Understanding hospice and the benefits it provides can help you during these difficult conversations. Be present with the patient and actively listen to their stories. Ask questions to better understand the patient’s and family’s preferences and values. A family meeting, with the patient’s needs guiding the conversation, can help ensure discussion of all preferences and agreement about how to move forward.

Remind the patient that the Medicare hospice benefit covers hospice services; does not require cost sharing; and includes regular nursing visits, 24/7 on-call and full team support from healthcare professionals and volunteers, and home delivery of equipment and supplies (including medications). Explain to the patient and family that they’re allowed to discharge hospice services if goals change or if they feel their needs aren’t being met. If the patient and family say that they don’t want hospice services, broach the subject with them again at a later date to re-examine needs and goals.

Six months after beginning palliative care, Mr. Linden is hospitalized with an ejection fraction of 10%, shortness of breath at rest, fatigue, and cachexia. Despite maximum medication titration and outpatient monitoring, his condition progressively worsens. Mr. Linden isnt a candidate for advanced therapies. Multiple providers document a prognosis ranging from weeks to months. The palliative care consult team assesses goals of care and assists with symptom management.

Mr. Linden reports a significant decline in his quality of life as a result of his increased symptom burden. Hes especially concerned about shortness of breath, which causes him significant anxiety and prevents meaningful goals discussions. He responds well to the addition of low-dose opioids and initiation of a bowel regimen.

With symptom management, Mr. Linden acknowledges that hes no longer responding to therapies for his weak heart. He expresses a desire to transition home to be with his family and his dog. The team discusses level of care options with the patient and his wife. They opt for hospice services at discharge. In the context of new goals, Mr. Linden changes his code status to do not resuscitate.

At home, interdisciplinary hospice support begins with the nurse, chaplain, and social worker providing medical care, legacy building, and support for anticipatory grief. Mr. Linden progressively declines. Two weeks later, he requires more frequent nurse visits and the addition of an aide to assist with daily personal care. The family finalizes obituary and funeral plans. Child life services continues to provide age-appropriate support for Little David as his great-grandfathers condition worsens.

Three weeks after Mr. Linden begins hospice care, he dies peacefully with his dog curled at his side and his family gathered around his bed. The hospice care team offers family grief support; they receive bereavement care for 13 months. The family grieves, but they cope well and remain healthy.

Appropriate and timely referrals

Acquiring primary palliative care skills and incorporating them into practice can help you assess patients for unmet palliative care needs, educate patients and families about the difference between specialty palliative care and hospice, promote goal-oriented discussions, and deliver patient- and family-centered care. Your understanding of the difference between specialty palliative care and hospice can help ensure appropriate and timely referrals.

*Names are fictitious.

The authors work at the University of Alabama in Huntsville, College of Nursing. Lenora Smith is an associate professor, and Jennifer Vann is a clinical assistant professor.

American Nurse Journal. 2024; 19(9). Doi: 10.51256/ANJ092482

References

Buttorff C, Ruder T, Bauman M. Multiple Chronic Conditions in the United States. 2017. RAND Corporation. rand.org/content/dam/rand/pubs/tools/TL200/TL221/RAND_TL221.pdf

Center for the Advancement of Palliative Care. Serious Illness Strategies: Driving Value in High-Need Populations. 2022. capc.org/documents/download/214

Guide Dogs of America: Is a facility dog right for your facility? guidedogsofamerica.org/facility-dogs

Jacobson M, May P, Morrison S. Improving care of people with serious medical illness—An economic research agenda for palliative care. JAMA Health Forum, 2022;3(1):e214464. doi:10.1001/jamahealthforum.2021.4464

Jacobson M, May P, Morrison S, et al. Improving care of people with serious medical illness: An economic research agenda for palliative care. The Evidence Base. USC Schaeffer. January 28, 2022. healthpolicy.usc.edu/author/mireille-jacobson-phd

Jenkins TM, Chapman KL, Ritchie CS, et al. Barriers to hospice care in Alabama: Provider-based perceptions. Am J Hosp Palliat Care. 2011;28(3):153-60. doi:10.1177/1049909110380199

Kelley AS, Bollens-Lund E. Identifying the population with serious illness: The “denominator” challenge. J Palliat Med. 2018;21(suppl 2):S7-16. doi:10.1089/jpm.2017.0548

Kirk M, Hanson LC, Weinberger M, et al. Pilot test of an adapted intervention to improve timeliness of referrals to hospice and palliative care for eligible home health patients. J. Palliat Med. 2019;22(10):1266-70. doi:10.1089/jpm.2018.0504

May P, Normand C, Cassel JB, et al. Economics of palliative care for hospitalized adults with serious illness: A meta-analysis. JAMA Intern Med. 2018;178(6):820-9. doi:10.1001/jamainternmed.2018.0750

National Hospice and Palliative Care Organization. NHPCO Facts and Figures. 2022. nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2022.pdf

National Institute of Aging. What are palliative care and hospice care? May 14, 2021. nia.nih.gov/health/what-are-palliative-care-and-hospice-care

U.S. Census Bureau. Population projections. census.gov/programs-surveys/popproj.html

van Dussen D, Cagle J, Plant AJ, Hong S, Culler KL, Carrion IV. Measuring attitudes about end-of-life care: Evaluation of a modified version of the hospice philosophy scale. J Appl Gerontol. 2020;39(8):828-33. doi:10.1177/0733464818774640

Key words: hospice, palliative care