Home is Where the Heart is: Ethical Challenges of Home Based End of Life Care

elderly couple talking

By David Campbell, PhD
Numerous studies and surveys have shown that most people would rather die at home than in a hospital. This makes perfect sense as one’s home is usually not only a place of physical comfort, but also significant psychological, emotional and spiritual comfort.

However, for family members who provide care for a loved one who chooses to die at home, there can be unanticipated burdens and challenges which can pose ethical dilemmas which can lead to moral distress. Moral distress describes the discomfort when you cannot fulfill your moral commitments or duties because of external factors beyond your control. It is a situation where you know the right thing to do but cannot do it and therefore your moral integrity of identifying as a good person is challenged and therefore causes significant emotional strain.

In the case of end-of-life care, perhaps the first and hardest ethical challenge for caregivers is to accept their loved one’s decision to refuse ongoing aggressive medical treatments and instead opt for symptom management. This decision to choose quality of life over trying to extend life can be hard for family members to accept. Caregivers might be tempted to try to pressure their dying loved one to “not give up” and “keep fighting.” Yet this is ultimately an individual choice and there are limits to what modern medicine can do. There is a point where medical interventions are no longer beneficial and merely prolong the dying process. If caregivers truly love their dying family member, they should accept their choice regarding end-of-life care.

After accepting a loved one’s wishes to forgo aggressive medical treatments and opt for a palliative approach to care, probably the main cause of moral distress for caregivers providing care for a dying family member at home is the inability to provide the level of care that their loved one needs. Managing a death at home requires significant planning and resources, not only financial resources but also mental and emotional resources. If caregivers do not have adequate resources and support from family, friends, and the community, caregivers are in danger of burning-out and endangering their own mental and physical health.

Another ethical challenge for caregivers providing end-of-life care is to accept their own limits and to be able to ask for and accept help.  Too often caregivers who have been in the role of being a caregiver for an ailing family member become so immersed in their role that they think they can do everything and that only they can provide the care that their family member wants or needs. Yet this attitude can be harmful, as it can lead to burnout and even physical self-harm.  For example, a caregiver could injure their back or even fall when trying to lift their family member from the bed or toilet. A caregiver might be so overwhelmed with trying to do everything they can for their dying family member that they are no longer thinking straight and realize that they need to ask for help. This dogged determination to “not give up” on caring for their loved one can be based more on feelings of pride, loss, or desperation than the objective needs of the dying family member.

While it is ethically important to respect the wishes of a dying family member to die at home, it is essential to have honest discussions about what this might look like and to be realistic about their expectations. It is therefore best to have these discussions early and to educate yourself on what supports are available in the community, what supports you might need, and to make sure that you are physically, mentally, and especially emotionally prepared to fulfill this final request. The virtues of honesty and humility must balance compassion and fidelity to promises. Being a caregiver does not mean you have to be a martyr and there is no shame in knowing your limits and asking for help.

David Campbell, PhD, is an Ethicist at Kingston Health Sciences Centre

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