FAYETTE — Two guest speakers with decades of experience in health care spoke Sept. 15 at Starling Hall, offering families guidance on how to navigate serious illness and prepare for end-of-life care.
Pam McKinley, a licensed therapist and longtime elder care provider, co-founded Family Tree Home Care in Massachusetts with her sister in the late 1990s. A summer resident of Fayette since 1985, she has cared for her mother with dementia since 2016 and is writing A Caregiver’s Journey, a book about the emotional side of caregiving.
Lissa Rockwood, a nurse educator from Augusta, retired to Maine in 2021 after decades in nursing, including end-of-life care work in Boston. She now works part time for Andwell, a nonprofit hospice and home care agency, and serves as vice president of the Maine Hospice Council.
Together, the speakers explained that palliative care is not limited to those at the very end of life. It can be offered at any stage of serious illness to improve quality of life, manage symptoms, and support families. Hospice, by contrast, is reserved for patients with a prognosis of six months or less and is fully covered by Medicare.
Practical guidance
The session highlighted planning tools families can use. A health care proxy form, available online, designates someone to make medical decisions if a patient cannot. Advance directives allow people to document choices about treatments such as feeding tubes or resuscitation.
Physician Orders for Life-Sustaining Treatment (POLST) and Do Not Resuscitate (DNR) forms require a doctor’s signature and become part of a patient’s medical record.
Maine’s Death with Dignity Act was also discussed. The law allows terminally ill patients with six months or less to live to request medication from a physician to hasten death. Few doctors in Maine participate, and insurance does not cover the process. The speakers noted that while the option exists, early use of palliative care often provides families with more consistent symptom management and support.
Alzheimer’s and planning
The speakers stressed the importance of planning early when Alzheimer’s or other forms of dementia are diagnosed. They clarified that dementia is an umbrella term for cognitive decline, while Alzheimer’s is a specific disease with its own progression. Both are terminal conditions, though Alzheimer’s typically ends when patients lose the ability to swallow and develop aspiration pneumonia.
Families were encouraged to use the stages of Alzheimer’s to anticipate decline and make decisions in advance. Establishing a durable power of attorney or medical proxy early ensures a trusted person can make legal and medical decisions when the patient can no longer do so. Advance directives prepared during the early stages allow patients to state clearly how they want their care handled later.
Takeaway
The overall message of the session was that while serious illness cannot always be cured, families can improve the experience by planning ahead, seeking palliative care, and understanding the medical and legal resources available.
