Ethical challenges in advance care planning
A Submission to the National Ethics Advisory Committee
In New Zealand the National Ethics Advisory Committee (NEAC) has developed a draft consultation document exploring the ethical challenges in advance care planning encountered by health professionals. The intention of the consultation document was to further explore these challenges. The Nathaniel Centre responded with a submission to NEAC, which is summarised here.
For further information on advance care planning readers are invited to read the article "The Last Word: The Catholic case for advanced directives", in Issue 35 of The Nathaniel Report.
Introductory comments
We strongly support the broad concept of advance care planning understood as "a voluntary process of discussion and shared planning for future health care" (NEAC Draft for Consultation, p.2) . We acknowledge that healthcare professionals are an integral part of the process of creating an effective advance care plan, but we believe that the document takes an overly narrow approach to the issue by defining it as essentially a process "between a person and health professionals" (p.2).
We advocate a broader understanding of advanced care planning and wish that the long term New Zealand strategy encourage persons to reflect on decisions about care and treatment at the end of life before they become chronically ill. As Daniel Sulmasy notes: "There is almost a moral imperative for people, realising that they very well might die in a state of mental incapacity and aware that each is the judge of his or her own limits, to execute advance directives in order to assist those who will make decisions for them." At the same time we recognise that advance care plans are not a panacea for the complexity of end-of-life decisions.
The process of planning for future health care should not be limited to a discussion between a person and their key health professional. This assumption reflects a particular western cultural perspective which gives undue emphasis to the person as an autonomous rational individual rather than an interconnected and interdependent person who is part of a community. Secondly, even within this perspective, we believe it is not best practice to adopt a process that centres advance care planning primarily on the person and their health professional. This can foster a fragmented approach to the care of the person, resting on a narrow view of health to the exclusion of other dimensions of well-being. We advocate taking a more holistic approach that includes addressing cultural, family and religious or spiritual needs.
Feedback on draft consultation
The focus on the health professional reflects a too narrow view of health and well-being, and raises the potential for various conflicts of interest to arise. The health professional may exert significant influence over their patient and the direction that the planning takes; they are in a position of advising a person about the desirability or otherwise of refusing future treatments which they would otherwise be legally obliged to provide. They are, practically speaking, the 'gate-keepers' for precious and increasingly scarce health care resources.
The practicalities of facilitating a thorough and ongoing robust process of advance care planning: Doctors work under extreme time pressures and fatigue and stress could easily affect the quality of the planning process. A good process requires space and time and therefore adequate resourcing. Lack of resourcing becomes a serious ethical issue.
Involvement of family members or others in the process: There are times when people might need protection from their families' involvement. For a variety of reasons including their own feelings of inadequacy or an inability to provide care and support, family members might coerce the patient into a decision that they would not otherwise make. Aged Concern notes that 80 percent of elder abuse is carried out by families.
There is only minimal reference to New Zealand's multicultural population. The premise of the draft consultation reflects largely Western individualistic notions of decision making which may not be viewed as appropriate by some people. In cultures where individuals are viewed as enveloped in connections to their families, communities, land and ancestors, the advance care planning approach as laid out in the draft consultation offers very limited arrangements and may even be an alienating experience. This will require much broader consultation and reflection.
There are ethical issues generated by the confluence between personal choice and social and cultural context. All decisions are made in, and are shaped by, our context. In a society where the elderly are experiencing greater social isolation and where there is a view of the infirm and disabled as a 'burden' on family and society, a person's choice may reflect a societal notion that they have a moral responsibility to accept certain options, including limiting their care. This area also needs more reflection.
The draft consultation notes the assumption of competence in the Code of Health and Disability Services Consumer's Rights. However, because of the particular vulnerability of certain patients (such as children and adults who may have diminished competence) who wish to formulate an advance care plan, there needs to be additional provision to ensure the full participation in the decision-making process of those deemed to be of 'diminished competence' or 'not competent'.
We approve of advance care planning as "voluntary" but are concerned there is some evidence that such plans are being seen as a pre-requisite for acceptance into some aged care facilities (p.5). We strongly affirm the position that any decision by a person to decline to take part in care planning should not adversely affect the care and treatment they receive and that they should not be pressured or coerced into making or documenting advance decisions (p.7).
We agree with the document's concern about placing too much emphasis on the 'plan' itself rather than the 'process' of planning. This could unwittingly lead to a minimalist 'tick box approach' as recently evidenced in the United Kingdom with the Liverpool Care Pathway.
Advance care planning should be seen as an ongoing conversation and needs to be regularly reviewed and updated (p.4). The language used in this document and in promotional and educational material should reflect a focus on 'planning' rather than 'plans'. The terminology used needs greater consistency, clarity and precision.
Our preferred approach to advance care planning is that a proxy be nominated by the patient, someone who knows the patient's values and wishes and with whom they have discussed their wishes on a regular basis. This typically results in an oral plan, or a combination of oral and written. We also favour a less-specific form of plan as discussed in the draft consultation (p.4). A person's preferences change as they cannot foresee how they might react to a particular situation, and a particular health-related experience can re-shape desires and preferences about care and treatment.
We recognise the importance of health professionals being alerted to the existence of an advance care plan (p.11), whether written, oral or a combination, and the advance care planning process must take account of the fact that a plan may exist in any one of these forms. The existence of a plan on a data base must not become a substitute for ongoing discussion between the patient and/or family and health care team. An undue emphasis on gathering written advance care plans and storing them on a centralised database could militate against the need for flexibility and continuing review and discussion.
We think it is particularly important to reflect on how the process of advance care planning could be integrated with the legal provisions for appointing an Enduring Power of Attorney
Organ Donation: A strategy to implement advanced care planning that encourages persons to reflect on decisions about care and treatment before they become chronically ill provides an opportunity to prompt persons to reflect on their willingness, or otherwise, to become an organ donor. This may well assist in increasing the number of organ donations available.
Concluding Comments
We support encouraging persons to reflect on how their personal values shape the sort of care and treatment they want at the end of their life. We think it is critical that there is greater awareness of the context in which we live and which helps shape people's decisions and wishes. Without such reflection, advance care plans could unwittingly become a vehicle for imposing societal biases and prejudices about quality of life and the 'burdens of care' above authentic personal choice and the respect and care due to all persons by virtue of our dignity as humans.
We are concerned that the process of planning be broader than the person and their health professional and believe it is preferable for persons, having consulted with their health carers, to opt to give their loved ones or a significant 'other' substantial authority to interpret their wishes in whatever form they have been expressed. We advocate for health professionals to talk to a person who knows and has been selected by the patient rather than refer solely to paper or electronic records. However, the role of a 'proxy' also has its limits because patients frequently fail to discuss their preferences.
To conclude, we believe in a process that emphasises the ongoing nature of planning and review and that outlines specific directions rather than one that focuses on the completion of written plans that try to anticipate specific situations. This emphasis is also likely to be more inclusive of different cultural perspectives and values.
December 2013
Staff of The Nathaniel Centre