(Reuters Health) – Many patients with decompensated cirrhosis do not have advance care plans in place to cover their trajectory of illness through end-of-life care, according to a new study that concludes this may be one reason they receive overly aggressive treatment.
Researchers conducted semi-structured interviews with 42 patients with decompensated cirrhosis and 46 clinicians at three transplant centers in California. All the patients a poor prognosis, with at least one portal hypertension-related complication, and prior or current Model for End Stage Renal Disease (MELD) sodium score of at least 15.
The goal of these interviews was to determine patient preferences, and clinical practices surrounding discussions about advanced care planning and end-of-life care. Overall, interviews highlighted many missed opportunities for clinicians and patients to have meaningful conversations about alternatives to aggressive treatment at the end of life, researchers report in JAMA Internal Medicine.
“Because it is in ‘advance,’ it usually is not the priority and gets crowded out by issues that need immediate attention,” said lead study author Dr. Arpan Patel of the University of California, Los Angeles and the Veterans Affairs Greater Los Angeles Healthcare System.
This is particularly the case when patients who are seriously ill have a treatment option – such as a transplant – that can dramatically improve their health and extend their life, Dr. Patel said by email.
“It is much easier to focus on this miracle of medicine rather than discussing goals of treatment and preferences if things do not go in the direction one hopes,” Dr. Patel said.
Part of the problem appears to be that patients tend to discuss their preferences for end-of-life care more often outside of the outpatient setting than when they are in the clinic, the interviews found. While many patients said they were open to these conversations, and many also expressed a wish to receive less aggressive care at the end of life, very few patients recalled discussing this with clinicians.
Another issue is that transplant teams tended to focus more on the potential for good outcomes from surgery rather than focusing on end-of-life care, the interviews also showed. Patients said any concerns about dying were not addressed in these discussions with transplant teams.
When clinicians did discuss death, it was more commonly a topic brought up as a tool to encourage behavior changes, the interviews found. Patients reported discussions about death in the context of conversations about the need to stop drinking or the necessity of a transplant, for example, but not in the context of advanced care planning.
Transplant teams also focused more on aggressive treatment, and clinicians on these teams often expressed the sentiment that a referral to hospice or a do-not-resuscitate order would run counter to the purpose of doing transplant surgery, the interviews showed. Clinicians reported asking patients to choose either a transplant or comfort-based care, rather than discussing a continuum of care that might shift over time.
Finally, the interviews also showed that family caregivers and other surrogate decision makers for patients didn’t feel prepared to make end-of-life decisions and were often surprised when told that a transplant wasn’t a viable option.
One limitation of the study is that the interviews didn’t capture perspectives from key clinicians in these decisions, such as members of palliative care teams or primary care physicians, the study team notes. Results from the high-volume transplant centers in the study also may not be representative of what clinicians or patients would experience elsewhere.
“Patients are not equipped with the information that they need about the trajectory of their illness,” said Dr. Jennifer Lai, a transplant hepatologist and associate professor of medicine at the University of California, San Francisco, who coauthored a commentary accompanying the study.
Even when patients are well-informed about their options for end-of-life or comfort care, they have a hard time bringing it up to their clinicians and knowing what questions to ask, Dr. Lai said by email.
“Clinicians need more specialized training to equip them with the language to discuss prognosis and advanced care planning in a way that is realistic and promotes preparation without feeling like they are extinguishing hope,” Dr. Lai said.
SOURCE: https://bit.ly/3qWd7me and https://bit.ly/3lnjlKJ JAMA Internal Medicine, online March 15, 2021.
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