Working with Patients and Substitute Decisions Makers (SDMs)

If it feels to providers as though the SDM is not respecting the preferences that were clearly stated (either verbally, or in writing) by the patient themselves when they had capacity, it can be a good idea to sit down with the SDM and revisit the requirements of their role. This might include reminding the SDM that they are meant to follow and respect what the patient themselves would have wanted for their care. It might be helpful to point to documents (such as a personal directive) to remind the SDM what the patient had expressed prior, or even asking the SDM to reflect on statements made by the patient before losing capacity, to determine values and goals.

In some cases, the patient's clearly expressed, capable preferences may not be recorded or easily understood or applicable in the context of a new medical situation. This can sometimes lead to an SDM's decision that, to the team, feels out-of-step with the patient's values and beliefs or best interests. In this case, a family meeting(s) should be offered to share information and try to improve mutual understanding.

There is no "one-size fits all" answer to this dilemma. Sometimes it can generate significant moral distress for bedside healthcare providers who are tasked with delivering the intervention despite the patient's resistance. It is important to reassess the appropriateness of one's approach to implementing an intervention when a patient resists and revisit the informed consent process with an SDM. In some cases, the SDM may want to continue with an intervention even with a patient's physical resistance such as pulling away, gesturing "no", or pulling out tubes or lines, etc.

In these kinds of circumstances, the healthcare team may benefit from reviewing the Restraint as a Last Resort Policy and Procedure.

Respecting preferences is important, but this can be limited by the requirement for healthcare providers to act within their professional guidelines.

In some cases, an intervention may have been started but the context has relevantly changed, and the intervention is no longer within accepted medical practice. In such cases, the treating physician and the healthcare team may find themselves in tension with an SDM who wants the intervention to continue. Healthcare providers need to adhere to relevant Nova Scotia Health or District Health Authority policies and professional standards on withdrawal of care and decisions about potentially life-sustaining treatment. Managers are encouraged to use the interdisciplinary team and internal supports, and to engage with Ethics and Legal, as needed.

If you notice that an SDM is struggling under the burden of decision-making, ask how you may be able to best support them. It may be validating and helpful for the SDM to hear from a healthcare provider an acknowledgment that it can be hard to make healthcare decisions for someone else, and that it is common to be sad and upset. Ask them if there are other family members or relatives who may be able to be more involved to provide support.

SDMs may also have financial or practical concerns associated with being the SDM, such as not being able to obtain time off work, other caretaking responsibilities, or paying for travel, accommodations, and parking. SDMs who experience these kinds of challenges may well be willing to act as the SDM, but may need some accommodation, flexibility, and support from the healthcare team. Depending on the situation and the issues the SDM is struggling with, consider if there may be other types of support, such as social work, spiritual care, bereavement support, or ethics consultation, that might be useful. It may be useful to direct them to the patient and family guide Making Health Care Decisions for Someone Else or the Patient and Family Ethics Tool. These resources are also available in French, Arabic, Chinese.

Sometimes, while they still had capacity, a patient may have expressed a wish to receive care in a certain location (for example, at home), but their wishes and needs cannot be met in that location. There are some instances when healthcare staff can come up with ways to meet the patient's needs and preferences, but there are some practical limits. For example, when a patient needs specialized care that involves a particular kind of expertise (such as care from a chemo nurse) or specialized equipment (like an MRI machine) that is only available in certain locations, or when a patient needs 24-hour support from a healthcare provider (when this is not possible in their home). In these situations, healthcare providers and SDMs work together to decide how to best meet the patient's needs, using the options available. It may be necessary for the team to engage the health services Manager for help finding a resolution that preserves access, meets the patient's needs, and is feasible. Clinical Ethics support may also be useful.

Sometimes capable SDMs exhibit counterproductive behaviours in relation to their SDM role. For example, false hope, lack of hope, misdirected anger at the team, or partial denial of relevant information. These situations can be frustrating or difficult for team members to navigate. Teams may benefit from examining their assumptions about what the SDM is trying to communicate. For example, an SDM with "false hope" may be expressing a wish that things could be different as part of grieving or beginning to appreciate that things are not going to improve or change. Once they have a chance to work this through with support from the team, they may then be able to make decisions that are more in line with the patient's preferences or best interests.

Teams need to think about their own behaviours and if and how they may be contributing to the SDM's behaviours or beliefs. For example, sometimes teams who are working with SDMs who appear to have false hope may try to repeatedly provide the SDM with the same or more information. While correcting misunderstandings can be helpful, sometimes this is experienced by the SDM as not being heard or understood. If there is continued disagreement after careful attempts at communication, the team should consider engaging social work (if not already involved), ethics support or other internal resources for help facilitating dialogue.

In some cases, healthcare team members may feel a tension between their duty to respect the autonomy of a substitute decision-maker and their duty to protect vulnerable persons. Healthcare team members are encouraged to discuss their concerns about risk with the SDM, and, as appropriate, the patient as well. There may be gaps in understanding that account for the risky choice that clearer and more direct communication can resolve. A SDM may not be fully aware of a particular risk unless and until it is explicitly described.

However, sometimes disagreement might arise not because of informational gaps, but because of underlying differences in risk tolerance, or reasonable disagreement about what values are most important, all things considered. In some cases, risky choices may be entirely consistent with how the patient lived their life and the kinds of risks they were willing to accept for the sake of some other good. Sometimes there can be creative ways to mitigate or reduce risk.

If there is genuine concern about the riskiness of an SDM's choices or actions, perhaps due to a perceived conflict of interest or complex family dynamics, teams may benefit from reviewing relevant sections of the Abuse Prevention and Response - Policy and Procedure - NSHA AD-QR-001.

In some situations, the SDM may mistrust or distrust the health team and doubt whether the healthcare team is telling the truth. There are various reasons why SDMs may mistrust healthcare teams. Sometimes they may not trust the health system in general, rather than their distrust being a response to a particular care team. Sometimes they have had previous negative experiences in the health system, such as adverse events, that influence their perspective.

It can be hard not to take an SDM's lack of trust personally. Honestly acknowledging and exploring the source of the mistrust may be useful. Attempting to rebuild trust with the SDM is recommended, such as engaging the SDM in problem-solving. Support from Social Work or Ethics may also be helpful.

There is no simple way to remove an SDM who has decision-making capacity. If the team is really struggling and all other options are exhausted, contact Legal Services.

Moral distress can exist when one feels powerless to bring about what one takes to be "right". It often arises in situations where it becomes (or feels) impossible to honour or act on deeply held values or beliefs. Moral distress can leave people feeling that their integrity, moral identity, or sense of wholeness is compromised. It may be useful to reflect on whether you or others, including an SDM, are experiencing moral distress. Moral distress can sometimes be lessened by opportunities for thoughtful discussion with relevant stakeholders. Engagement in quality improvement or education may also assist healthcare providers to regain a sense of agency. Support from Ethics may also be appropriate.

In addition to resources provided by professional associations and regulatory authorities, below are some links that may be useful: