Getting on in a medical career, especially caring for elderly people whose priorities don’t tend to be technically-based or even specific, I sometimes suspect that my value to people if any is sort of symbolic. Not the white coat exactly but a source of information useful in a crisis. What should I do? people often seem to be asking.
An elderly lady who was mentally clear but had several incurable chronic illnesses got into trouble recently. She had been supported at home by our team and also looked after by her adult kids for about a year and a half. Although she expressed it in a roundabout way, there was never any question that she wanted to stay home, and also that she understood she was at the end of her life and was quite ready to die. Wanted to die in fact, without any convincing suggestion that she was depressed. She suddenly lost most of her independent function a few weeks before she died, and I wasn’t able even with the help of capable other team members to figure out why this had happened. We made an educated guess that she had a chest infection, but the antibiotics we gave her only made things worse.
After careful and I hope gentle conversations with her, it was decided that we would live with not knowing why she had suddenly gotten worse, keeping in mind the possibility however slight that if she went to the hospital, saw specialists, was examined and Xrayed, something that could be fixed might be found. Even if that happened, she insisted, the best she could hope for would be a return to her not-very-satisfactory situation of a few weeks ago, and more waiting for the next crisis. We set things up to keep her comfortable at home, and everyone including her family waited for the end.
Then something went wrong: she woke up one morning with a painful, pale, and cold left leg. Obviously the leg artery was blocked with a clot. Her kids (well into middle age of course) disagreed about how to construe this. The son felt it was just another step in his mum’s expected descent. But the daughter took this new turn for the worse to mean that palliation at home had failed and now it was time to get proper professional help. This view prevailed, and my patient landed in the emergency room.
There a capable academic vascular surgeon saw her, and tried to dissolve the clot with injections of strong anticoagulant medicine. This didn’t work. I had called in and explained to the emergency room doctor my patient’s expectation of death and preference for comfort, and then once the surgeon began his treatment I put in a phone call to him to convey the same message, but 24 hours later there had been no response. When I visited the hospital I was only able to say a few words to the lady who was sedated, unable to recognize me, and being hustled onto a stretcher to be taken for vascular imaging. The son let me know that the surgeon was going to try to remove the clot surgically, and if that failed which it probably would he intended to amputate the leg above the knee.
I’m used to dealing with patients’ and family members’ questions about the acceptable or right thing to do in all sorts of ambiguous situations at home when people are near the end of their lives. It’s okay, I tell them, for someone to die comfortably without our knowing exactly what caused the final fatal crisis. “If it were my mum…” I often say.
But coming up to the planned surgical rescue of my patient’s leg (actually rescue of her life, through sacrifice of the leg) I called the vascular surgeon again because I sensed this time it was not the patient or family that needed permission not to proceed according to textbook or cultural expectation. I was right. The surgeon once I got him on the phone was not at all the remote and supremely confident nuts-and-bolts technician I was expecting, but a troubled and reasonable person, wondering what to do with his obviously frail elderly patient, in the face of clear-cut guidelines concerning her leg that he felt he couldn’t ignore.
After I explained her circumstances and her wishes and we talked about the probable postoperative course and likelihood of her ever getting out of the hospital, he sounded relieved and agreed that the best thing to do was assure comfort for our patient.
She died less than two days later.
Permission. Sometimes I think it’s the most valuable thing I can give people. We are used to the idea of permission to do something, but often what we need is permission not to. Isn’t it interesting that the people who need that permission are sometimes the most highly-qualified members of my own profession?
Oh my goodness. What a story. What incredible food for thought. This is the stuff that we need to be aware of, to be able to think ahead past the ‘fill in the blanks’ end-of-life decision-making we participate in these days (if we’re lucky enough to do so). The lesson in your story for me is about taking control of our own health, and trying to help others to do the same, in a way that we are not all too familiar with yet for the most part, so we can arrive at better over-all decisions. I take care of my mom with very compromised health and dementia in a home setting with 24/7 caregiving – instead of long-term care. There are many twists and turns in the road ahead for us and my greatest hope is to navigate the challenges ahead with insight and purpose and intent as you have described here.
You bring up the point of the ‘physician’ perhaps being more in place as a guide through the medical process…as opposed to the technical role we assume physicians to be…to be there to tell us what is wrong with our aging parents and prescribe treatment to get them better (although knowing that treatment may some day not work for them)…I can only marvel at your role in the medical system to advocate for our elderly…to me that makes you the most highly qualified of your profession, with the most difficult yet so important ‘job’ to do.