Role of Palliative Providers in the Progressive Burden of Caregiving

In the current issue, Levy et al. report on perceptions of hurt or offenses by hospice caregivers and clinicians. Forty-two percent of caregivers reported these episodes, and 69% of clinicians reported witnessing such episodes. Caregiver-reported offenses were associated with worse bereavement scores. Majority of the episodes occurred related to family members or clinicians before hospice referral. This study is important because it highlights a poorly studied aspect of patient, caregiver, and clinician suffering in palliative and hospice care.

Caregivers of hospice patients are mostly in their late 60s, female, and have mostly limited or no medical background. They suddenly become responsible for administration of all regular medications, decisions, and administration of all rescue drugs for pain, dyspnea, agitation, etc., all hygiene, elimination, and nutrition, emotional support, and are likely to be alone with the patient at the moment of death. The anticipation and experience of this role put great burden on caregivers.

Acute care institutions emphasize almost universal patient discharge, not always assessing the ability and willingness of the caregiver to assume this role. In recent studies, more than one-third of caregivers preferred the patient to die in the hospital. ¹ Caregivers' distress may contribute to episodes of hurt. Better screening accompanied by increased education before discharge and support after discharge will be needed. Some patients and caregivers may not have the access to emotional, physical, financial, and extended family resources for a home death. In these situations, a hospital death may be the best for patient and caregiver. Making palliative care units universally available in all major hospitals and removing hospital death as a poor quality metric are two ways to support those patients and families when a home death is not a good option. ²

One of the most frequent hurtful interactions identified by Levy et al. included clinicians. Caregivers experience progressive burden as patients experience clinical deterioration. ³ Clinicians do not receive appropriate training on how to deliver bad news, and executives do not allocate increased time for these encounters in the regular clinical templates. In addition, even with ideal communication practices, randomized control trials (RCTs) show that patients rate lower in compassion and professionalism than those physicians who deliver a less optimistic message. ⁴ These hurtful encounters harm not only caregivers but also clinicians, and they likely contribute to burnout in medicine and palliative care.

Perhaps the most concerning finding in the study by Levy et al. includes hurtful interactions between caregivers and their family/friends. ¹ Our health care systems do not invest significant resources for bereavement care, and, therefore, caregivers need to rely on their support network. ⁵ Hurtful interactions can greatly impair the relationships within a family and aggravate the caregiver's isolation at a time of great need. This study does not allow us to determine whether caregivers experienced worse bereavement due to the hurtful interactions, whether those who were already having more distress (at risk for worse bereavement) had more hurtful interactions, or whether (most likely) these findings reflect a combination of both mechanisms.

We need to better educate our clinicians on communication especially regarding bad news. To acquire new skills, we all need four major components: a teacher who will demonstrate how it is done, lots of practice (ideally under some sort of supervision) high level of motivation: “I want to learn this” rather than “the executives mandate that I learn this” and self- efficacy: “I can do this with some help.” Our executives need to make major structural investments to help clinicians acquire these skills, and also the changes in clinical templates needed for timely and safe delivery of bad news. Skilled and supported clinicians will likely have more successful conversations, will do them faster, and will suffer less chronic stress and burnout. These are all important areas for future research.

Palliative care teams are the experts in this field and they should be charged and resourced to be able to help all clinicians acquire and maintain these skills. Monitoring the frequency and severity of hurtful interactions will provide one more useful metric of success.