Three locally available family members felt that their father should have his life-prolonging therapies discontinued given his state of health status and that comfort measures should be the primary goal of care. These adult children felt that their father would never want to be kept alive like this and that his situation was an indignity. His current situation included being hospitalized for respiratory failure/pneumonia requiring mechanical ventilation; having a history of multiple strokes and failure to thrive; being bedbound, arousable but unable to communicate meaningfully; and being unable to perform any activities of daily living without assistance (e.g., eating, toileting, bathing, ambulating). A fourth adult child, an attorney living 3000 miles away (herein referred to as the “attorney son”) objected to the proposed change in goals and medical support.
The ethics consultation service (ECS) confirmed that the patient lacked decision-making capacity and that all the adult children collectively represented the patient’s proxy decision maker. However, the attorney son had not seen his father in over a year and was relying on his personal views about “not giving up.” A review of the patient’s advance directive did not provide sufficient guidance for this situation. The ECS arranged family conferences that included videoconferencing so that the attorney son could see his father and try to communicate with him.
After actually seeing and attempting to communicate with his father the attorney son started to modify his position about the use/non-use of life-sustaining treatments. The ECS facilitated the first meeting and suggested (with agreement from the treating team’s physicians) to continue the current treatment regimen for a specified amount of time to most likely demonstrate non-improvement. An agreement was reached at this time for the patient to have a “do not resuscitate” order. After the continuation of current treatments for the specified period of time showed no improvement, all family members agreed to a change in goals of care (and treatments) to comfort care.
Nursing staff objected to a new Rehabilitation Medicine policy that required referrals for swallowing evaluation to come from the rehabilitation medicine consulting service. Nursing staff felt that this created an unnecessary bureaucratic delay, whereas the Rehab Service felt that this ensured quality control and consistency with their other practices.
The ethics consultation service (ECS) reviewed the new hospital policy as well as the Executive Committee process for its approval. The approval process did not include opportunities for feedback from the affected stakeholder groups. In addition, the ECS surveyed general medicine and ENT physicians to obtain perceptions about the pre-existing referral process (e.g., concerns, positive and negative experiences). The survey results indicated overwhelming approval for the old process.
The new policy was discontinued, and the older policy was reinstituted. Moreover, the Executive Committee process for reviewing and approving/disapproving policy recommendations was revised to require (a) stakeholders’ feedback about a proposed policy change, (b) a plan for evaluating any change in policy to assess achievement of its objectives as well as unanticipated negative outcomes, and (c) a statement that documents the ethical underpinnings that support the proposed change.
End of life care decisions often pose uncomfortable challenges for patients and their families. Many patients and their families have difficulty conversing about this topic. Yet, there are times in which patients tell their loved ones that they “would never want to live like that.” This is often expressed when a friend or acquaintance is being kept alive without hope for improvement while being supported by a breathing machine, or unable to recognize their loved ones, or totally dependent on others for addressing basic care needs, such as toileting and eating.
To address this need an advance care planning workbook was developed to help patients (a) identify their most appropriate spokesperson if they lost decision-making capacity, (b) identify values and preferences to inform decision-making when a patient can no longer represent themselves, (c) talk with their family members or loved ones so that they are well informed, (d) talk with their health care providers to ensure they are well-informed and “on board,” and (e) develop documentation to address legal standards if necessary. Unfortunately, such a workbook was developed within the government health care system and was undermined by competitive and political considerations.
The meat of the advance care planning workbook was revised for a larger, non-government audience. The Cunniff-Dixon Foundation sponsored this effort and has made is accessible to the public. It can be reviewed and used, and is available at https://www.cunniffdixon.org/ (under projects, specifically titled Planning My Way).
Advance care planning (ACP) was intended to promote patient-centered treatment preferences after a patient lost decision-making capacity. To that end, patients in their current state of health identified their surrogate decision-maker and expressed their preferences for life-sustaining treatments. Unfortunately, reviews of the ACP results show mixed results (e.g., concordance between expressed preferences and real time decisions, patients’ quality of life, and utilization of healthcare).
Part of the problem lies in anchoring to traditional living wills that anchor to terminal illness where death is imminent. Other problems with traditional ACP include (a) failure to recognize that (a) patients’ desires to forego life-sustaining treatment often relate to health states deemed to be completely unacceptable (e.g., severe dementia, prolonged coma, severely disabled due to strokes), (b) patients have very different attitudes about short-term versus long-term life-sustaining treatments, (c) patients’ values and preferences often change with changes in health status, (d) inaccurate patient understanding of health state conditions, (e) patients need to discuss their preferences with their surrogate decision maker, family members, and healthcare providers to ensure shared understanding and acceptance, and (f) health care providers need training and experience with conducting thoughtful ACP discussions and not simply relying on living will documents that poorly inform future situations in which ACP can provide useful guidance.
Education of patients and education/ training of healthcare providers is required. Discussions of healthcare state need to be included in ACP. Preferences for life-sustaining treatments serve to validate the health state preferences. These discussions and appropriate documentation need to be revisited when significant changes in health and/or social circumstances occur. Quality improvement evaluations are required to ensure successful ACP processes and outcomes.
How often does your healthcare staff seek ethics related input directly from patient/family members?