When faced with her husband’s deteriorating health (secondary progressive MS and kidney cancer), Holly found her voice to advocate for her husband’s wishes, so that he could participate in a meaningful family celebration.

My husband had Relapsing-Remitting Multiple Sclerosis (RRMS) that moved into secondary progressive MS.  He eventually had only the partial use of one arm, requiring assistance with almost all daily activities.  He was diagnosed with kidney cancer that had metastasized to his lungs, for which he had surgery and chemotherapy.  These procedures weakened him and made swallowing even more difficult than usual, so that he had a couple bouts with aspiration pneumonia.  He was in the process of being evaluated for a G-peg since he hadn’t eaten for a week, when he had to be hospitalized during the evaluation due to having such low oxygen saturation levels.

It was late Friday afternoon, the testing procedure was not completed, and the prognosis was grave.  We were faced with possibly preparing for his death, but there was still a possibility that he might pull through. He was a very determined man, and he wanted to see his oldest son graduate from college in 3 months.

When I spoke with the intern and social worker about making an appointment with the hospice nurse, but also scheduling the procedure for the G-peg, they became very flustered and told me that I was confused and needed to choose one thing or the other.  I felt stupid, ashamed, and afraid to disagree with them, but I came back with a family member for support and insisted on doing both.  My husband was able to attend our son’s graduation 3 months later, and died a month later.

Some thoughts for clinicians:

• Provide options but don’t make judgments about them.
• Don’t solve.
• Allow patients and families time away from you to discuss options and make decisions. During these times of crisis, people are vulnerable, full of conflicting thoughts and feelings, afraid of making the wrong choice, and afraid of challenging medical personnel for fear of getting lesser care.

Thank you for listening to patients and their families.