The Black Sheep on the White Horse

Tom was diagnosed with Alzheimer’s dementia 8 years ago. His disease has been slowly progressing. He now requires 24-hour caregiving and is in the hospital with pneumonia. He’s developed swallowing problems, and his care team is planning a family meeting to discuss options for care, including the placement of a feeding tube and other treatments like Cardiopulmonary Resuscitation (CPR), should Tom decline further to the point where his heart stops or he develops breathing problems.

Tom has always been fiercely independent. He started his own business at age 25 and was very successful.  He has been separated from his wife for many years and she has been estranged from the family. Tom has a long-time girlfriend and two grown children. He was never sick until the diagnosis of Alzheimer’s, and he was very active. He enjoyed running marathons, traveling, and hiking. He had many friends and was very active in his church. With the advancement of his dementia, Tom has become more and more dependent on others for his care and rarely leaves his home. He has very few visitors. 

Tom has never filled out papers designating someone to speak for him regarding his medical care should he be unable to do so himself.

His children and his girlfriend believe Tom would want to let nature take its course and would like him enrolled in hospice without a feeding tube and with comfort-focused care. His wife has flown in from across the country and does not agree. She wants a feeding tube and any treatment that would prolong Tom’s life.

Some issues and questions that Tom’s story highlights:

  1. What is the family’s understanding of Tom’s illness and probable prognosis?
  2. What is a durable power of attorney for healthcare and how would it have helped in this situation?
  3. Who makes medical decisions when there is no legal document to use as a guide?
  4. What care options are available for Tom?
  5. How can his family be supported with making decisions around his care?
  6. What would Tom want if he were able to tell his family?