New Book Navigates Legal and Ethical Issues in Dementia Care

When a patient receives a dementia diagnosis, many ethical and legal issues arise that affect care decisions. Questions often arise in which providing medical care is weighed against the patient’s safety, autonomy, and dignity. For example: should GPS tracking devices be placed on dementia patients with high risk of wandering and elopement? In which situations is it considered kind to deceive or lie to dementia patients? In long-term care settings, where dementia is a prevalent condition, not all members of the care staff are adequately prepared to answer these questions. A new book titled The Law and Ethics of Dementia looks at these and other issues through a legal and ethical lens, with valuable applicability for direct care staff. Annals of Long-Term Care: Clinical Care and Aging® (ALTC ) had the opportunity to discuss one of these issues in greater depth with Michael Gordon, MD, MSc, director of palliative care, Baycrest Geriatric Healthcare System, Toronto, Canada. Gordon authored a chapter in the book that focuses on physician-assisted suicide (PAS) and the refusal and withdrawal of life-sustaining treatment in patients with dementia.

ALTC: The topic of your chapter is one in which law and ethics collide; PAS remains controversial for a number of reasons. What is at the heart of this debate?
Gordon: The heart of the debate is the almost diametrically opposite positions that pit individual autonomy (ie, the legal position of the right of individuals to participate in their own healthcare decisions) and the common good, which deems PAS as a serious harm to the patient, society, and the healthcare professionals requested to carry out the act. Beyond ethical principles of non-maleficence is the duty and belief in the sanctity of life, which in the minds of some religious individuals, supersedes individual choice and wishes. Walking the fine line between the two has been a challenge to legislators and jurists; thus, the gradual evolution of the law in a wide range of jurisdictions and the status quo in others.

What does your chapter cover?
Although the cessation of suicide criminalization occurred gradually in most if not all Western countries, there was a natural evolution to challenge PAS as the ethics-based autonomy movement began to take hold in many Western jurisdictions, particularly in North America. The chapter is a historical survey of the subject and substantive review exploring the issues that occurred in each step along the way. The recent overturning of the Canadian Criminal Code prohibition of PAS by the Supreme Court is another example of this evolutionary process.

What practical advice do you have for providers who care for patients in the terminal phase of dementia?
My advice is that providers should encourage their patients to have the important conversations with loved ones about their values and wishes in end-of-life situations while they are able to participate. When the terminal phase is near, providers should seek proper palliative care advice to make sure that symptom management is prioritized. Good palliative care in many ways addresses the concerns expressed by PAS supporters, and a robust palliative care system should decrease the number of individuals for whom PAS might be deemed an important choice. For those with dementia, the laws surrounding PAS would generally exclude them from that option in any event, making palliative care even more important.
 
The Law and Ethics of Dementia was published in June 2014 by Hart Publishing.