It can be challenging to discuss Advanced Directives, or elicit a loved ones’ final wishes for when they can no longer make medical decisions. The lack of advanced care planning can leave family members in a place of uncertainty when medical decisions must be made. A study on E1 looked to ensure that family members truly understood the wishes of their loved ones.
Planning and Advanced Directives
Although highly recommend, many of our patients do not have Advanced Directives or have not done any Advance Care planning for health care. This is especially true in Bone Marrow Transplant and Stem Cell Transplant patient populations that can sometimes require intensive care. When critically ill patients are unable to make health care decisions, the responsibility falls on the medical Power of Attorney if one is appointed in an advanced directive, or to the next of kin. We often find advanced care planning discussions between patients and family members has not occurred. Because of this missing communication, family members are often unable to make difficult decisions and are often unsure what a patient would want when asked to be a proxy for the patient.
Because of the lack of advanced care planning, a study was conducted on E1 BMT unit at Stanford Health Care to assess ways to bridge the gap and ensure a consensus was reached regarding what the patient wanted. The study utilized a letter advanced directive (LAD) with a dyad of patients and their family/proxy, where the patient and family/proxy would document their wishes or what they thought were the wishes of the patient using the LAD. A comparison of responses was performed and places of non-agreement were reconciled to ensure a an understanding of what the patient wanted. In total the study had 80 pairs of patients and their proxies from E1.
Our approach revealed a concordance in medical wishes (73 %) across the 12 questions asked. Wanting to be pain free at the end of life held the highest agreement. The biggest disagreement were over specific treatments, such as ventilator support, which more proxies refused than patients (59% vs 46% respectively). More proxies thought the patient wanted dialysis and hospice care than patients, and more proxies refused CPR and sedation to palliate refectory symptoms, like pain and shortness of breath, than the patients wanted themselves.
When discussing the findings and differences in the LAD, most were resolved in favor of the patient wishes. This process allowed an open discussion about patient’s treatment preferences between them and their proxy/family members. It helped reconcile differences and allowed family member to know what the patient wishes were and the ability to advocate for them when important decision needed to be make.
This work will be published in the Journal of Palliative Medicine and can be viewed here.
Article By: Trisha Jenkins