Patient and Caregiver Perspectives on Advance Care Planning

With advance care planning, patients are able to consider and communicate current and future treatment goals. For patients with kidney disease and their caregivers, advance care planning can be an emotionally charged process. Marcus Sellars, PGD Psych, and colleagues in Australia, conducted a qualitative study designed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward advance care planning. Results of the study were reported in the American Journal of Kidney Diseases [2018;71(2):216-224].

It is estimated that only 6% to 49% of patients with chronic kidney disease (CKD) utilize advance care planning worldwide. However, according to the researchers, advance care planning for CKD patients can expand the focus from dialysis and maintenance of physical health to identifying and addressing patient concerns and goals.

There is mixed evidence regarding the benefits of advance care planning for patients with CKD. While it is generally recognized that advance care planning includes communication between a patient and caregivers and clinicians to establish prefrences for end-of-life care, it is unclear what model is most effective in patients with CKD.

The current study included 24 patients with ESRD and caregivers (n=15). Patients were 55 to 91 years of age, and 16 were men. Twenty-two were receiving dialysis (hemodialysis, 21; peritoneal dialysis, 1), mean dialysis vintage was 9 years (range, 2 weeks to 40 years), one had received a kidney transplant, and one patient was on a conservative (nondialytic) care pathway (conservative was defined as patients with CKD stage 5 who had chosen or were medically advised to manage their condition with a nondialytic pathway).

Of the 24 patients, 13% (n=13) had opted not to begin advance care planning. Age of caregivers included in the study ranged from 36 to 78 years, and six were men. Eleven were spouses/partners, and the remainder were parents (n=2), children (n=1), or siblings (n=1). Ten of the caregivers cared for patients participating in the study, three for patients who did not participate, and two had been caregivers for patients who had died. Study interviews lasted from 18 to 56 minutes (mean, 36 minutes).

The researchers identified five themes: (1) articulating core values; (2) confronting emotionally difficult conversations; (3) negotiating mutual understanding; (4) challenging patient autonomy; and (5) decisional disempowerment.

Core values included avoiding treatments that were futile and undignified. Advance care planning was seen as a way to counter such treatments in most participants; one caregiver said that “under no circumstances would I regard life-prolonging treatments as futile.” Another core value identified was the need to adjust beliefs and expectations of dialysis, with some patients not being aware they had the option to discontinue dialysis therapy. Framing a life worth living and refusing to be a burden were two other values identified as informing decisions regarding advance care planning.

In discussions around confronting emotionally difficult conversations, some patients said they would be disturbed if a conversation regarding advance care planning were initiated because they would assume it meant they were dying; patients and caregivers said that advance care planning discussions required a sensitive, in-person conversation and that it would be upsetting to receive advance care planning documents during a medical crisis or in the mail.

Some participants refused to complete advance care planning initially, but did so later. Those individuals felt that introducing advanced care planning early on allowed them to process the reality of death and still have time to complete the advance care planning process. Patients who were older or who had longer duration of dialysis were more likely to discuss their own mortality. Some who refused advance care planning felt unable to accept the reality that the patient was “really that sick” and said that families and physicians would know what to do later and when “the time comes.”

For some patients, once the advance care planning process was complete, they felt relieved from depression and indecision about dialysis, uncertainties about their illness and eventual death, and were able to “move on” and “live the rest of their life as positively as possible.”

Including a clinician to facilitate discussions of advance care planning made the process easier for patients and caregivers and helped negotiate mutual understanding of the process. Discussions facilitated by clinicians were easier because the conversations were structured, there was someone to mediate between the patients and the family, and patients were more comfortable discussing topics that might have been avoided otherwise.

Patients indicated they felt forced to continue dialysis and that caregivers sometimes challenged patient autonomy in making decisions regarding discontinuation of therapy. Some families were perceived as putting pressure on patients without advance care planning in place to continue dialysis therapy or other treatments. One caregiver whose family member had died expressed gratitude that the physician had followed the patient’s advance care planning wishes rather than leaving the discontinuation of treatment decision up to him.

Patients felt that it was important to appoint “like-minded” surrogates, either caregivers or clinicians, to advocate for their wishes; other options included formally documenting their wishes in an advance care directive.

Finally, decisional disempowerment included issues such as a lack of medical transparency. Patients were sometimes disappointed or upset when they felt clinicians were withholding information on treatment and illness to provide the patient with hope. Participants wanted to hear about both the benefits and harms of life on dialysis or on transplantation in order to make informed decisions. In addition, some patients were disappointed that their clinician did not broach the subject of advance care planning or did not “want a copy” of or “had never heard of [an advance care direction] before.”

Including only English-speaking patients and caregivers in the interview process was a limitation to the study.

In conclusion, the authors said, “Advance care planning alleviated existential tensions for patients with CKD and their caregivers and provided a conduit for accepting and planning for the inevitability of death. However, advance care planning can be considered taboo and requires caregivers to overcome personal and decisional conflict. Some patients and caregivers may have difficulty accepting the reality of the patient’s illness. We suggest that advance care planning facilitators demonstrate empathy to make advance care planning more acceptable and less confrontational to patients and caregivers and ensure access to support for caregivers who may be experiencing overwhelming grief or who have conflicting goals when they are required to make end-of-life decisions on behalf of the patient.”

Takeaway Points

  1. Patients with chronic kidney disease and their caregivers offered their perspectives on advance care planning in a recent qualitative study.
  2. Five major themes were identified and explored in semistructured interviews with 24 patients with end-stage renal disease and 15 caregivers.
  3. Advance care planning facilitators should demonstrate empathy to make the process more acceptable and less confrontational to patients and caregivers.