Leslie Estep, MD
By Leslie Estep, MD – Chair of the Hospice of the Northwest Ethics Committee
When managing serious illness, patients, families and staff may find themselves unprepared for some of the difficult issues they face. Differences in personal values may create conflict or distress. The ethics committee at Hospice of the Northwest examines conflict, and the values underlying it, to help provide ethically sound care. This is accomplished through consultations on individual patients and through the development of guidelines and policies.
Ethics committees are a feature of many medical organizations. Values of personal freedom, the duty to help patients, the duty to manage resources fairly and the duty to avoid harming patients are four of the main ethical principles that guide medical decision making.
Sometimes conflicting values represent a true ethical dilemma such as the case of a woman with advanced dementia whose son requested she not be offered food from a spoon. He was trying to honor her previously stated wish that her life not be sustained if she wasn’t able to feed herself. Her caregivers felt obligated to provide this basic human need as long as she would accept it. Each value has weight. What is the best course forward?
Other times, staff or family members may experience moral distress when they feel they are not delivering the right kind of care to a patient. An example is a man who refused to accept lung medicines which would not only help him feel better right away, but likely would extend his life. This man’s choice led him to feel so short of breath he was unsafe at home. His family and our staff knew they could make him feel better and felt like he was making a mistake. Whose choice is this? Examining his values and weighing them against staff and family values helped ease staff distress.
Well-considered policies and guidelines can both ensure ethical practices and prevent moral distress in staff members. Can we, as an organization, endorse hiding medication in a patient’s food when they have explicitly refused medication in the past? What if this person’s shouting and agitation are frightening other residents at a facility? What if he is at risk of losing stable housing because of his behavior? What factors might make hiding medication justifiable?
The ethics committee at Hospice of the Northwest meets monthly and as needed.
Any staff member, patient, family member, caregiver or volunteer can request a consultation. The committee is comprised of a physician leader, a member of each of the disciplines of nursing, social work, spiritual care, bereavement and volunteer staff as well as dedicated community members. Guests may include family members, outside consultants and staff from other organizations.
The committee has helped develop policies and guidelines that address many important issues such as nutrition at end of life, medical aid in dying (Death with Dignity Act), pacemaker deactivation, palliative sedation therapy and fair allocation of resources. Equally importantly is that the committee creates a space for staff to come together to deeply explore difficult ideas and questions. This exploration makes the Hospice of the Northwest community stronger, wiser and more resilient.