Views on place of patients’ death differ between cancer patients, caregivers

A prospective cohort study shows that patient-caregiver dyads’ concordance in preferred place of death (PoD) changes over time at end of life (EOL).

 “[T]his study shows that dyads’ concordance for preference for home death decreases closer to death,” said the researchers.

The researchers used data from the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore study of patients with stage IV solid cancer. They analysed 227 patient-caregiver dyads and used data from patients’ last 3 years of life. The average patient age was 62.6 years, and 51.1 percent were men. Institution was the most common PoD (64.8 percent), followed by home (32.6 percent). Average age of caregivers was 49.8 years, and 63 percent were women. Nearly half of the caregivers (48.9 percent) were patients’ spouses. [Ann Palliat Med 2024;13:531-541]

Concordance in patient-caregiver preference for home death was categorized as both, neither, or only one preferred a home death.

In the last 3 years of life, 67 percent of patients preferred home death; 75 percent of caregivers had this option for their patients. But during the last year of patients’ life, the fraction of caregivers who opted for home death slid from 77.5 percent to 62.9 percent, as more shifted their preference to non-home death.

More than half of the dyads’ observations were concordant in their preference for home death (54 percent), but this dropped from 68 percent to 44 percent as death approached.

On multivariable logistic regression, dyads who preferred home death were less likely to involve older patients (relative risk ratio [RRR], 0.97; p=0.03), while those who preferred a non-home (hospital, hospice, nursing homes, unsure, or others) death were more likely to involve patients with greater symptom burden (RRR, 1.08; p=0.007) and spousal caregivers (RRR, 2.59; p=0.050).

Severe symptoms may discourage dyads from managing symptoms at home as these may require specialized medical attention, especially when they have tried home management and were met with challenges or failed. [BMJ Support Palliat Care 2022;12:e501-e504] Caregivers may opt for institutional death for patients to receive the appropriate assistance from professionals who could better provide symptomatic relief. [Support Care Cancer 2022;31:74; Psychooncology 2022;31:1152-1160]

For spousal caregivers, the preference for a non-home death may be driven by the reality that the task not only entails caregiving but also the thought of losing a partner. [J Psychosoc Oncol 2020;38:527-542; Am J Fam Ther 2022;52:276-294]

Gold standard

“Where would you prefer to die – at home, in a hospital, in a hospice, or elsewhere? It is an important preference that may be disregarded and unaddressed in the face of impending death,” the researchers said.

Home death is regarded as a gold standard and a quality marker for EOL care. [BMJ Support Palliat Care 2019;9:340-945; BMJ Support Palliat Care 2022;doi:10.1136/spcare-2022-003841] Home death is tied to physical and emotional comfort, as the home is a safe environment with familiar people. [Medicine (Baltimore) 2022;101:e30756; Asia Pac J Clin Oncol 2017;13:356-64; BMJ Support Palliat Care 2023;spcare-2023-004299] Moreover, the investigators pointed out that caregiving for loved ones evokes values of filial piety, especially in Asian cultures.

However, caregiving entails physical, financial, and psychological burden, the researchers noted. “[A] home death can be difficult to achieve, especially for patients who lack specialized home care and equipment … [I]t is not possible for all deaths to be managed at home.”

“Greater patient-caregiver concordance for preferred PoD can increase the chances of patients dying at their preferred place, thus improving quality of life at EOL,” the researchers said.

They underscored the importance of understanding the needs of older patients at EOL, optimizing home-based symptom control, and providing resources to better support caregivers to increase the likelihood of dyad concordance for home death.

“At EOL, balancing patients’ autonomy of choice and caregivers’ wellbeing is challenging. More effort is needed to understand patients’ EOL needs at home and alleviate caregivers’ distress,” the researchers concluded.