A guide to making health decisons

For the average patient, navigating the health care system can be daunting, intimidating, and frustrating. For those who are caregivers of older patients, you add feelings of intense guilt, burden and regret sometimes. And for those who are unexpected decision makes, it can be overwhelming. Full code or no code? Which nursing home? How to manage finances? Which medications? What would my loved one want? etc.

I plan on writing a guide for health care decision-makers/caregivers to help navigate a variety of contexts: the office visit, hospital, nursing home, hospice as well as specific decisions such as: is this the right diagnosis; should I start/stop a medication; is a surgery necessary, feeding tubes, code status.

I will tell a story of a patient of mine. I have a young 50+ year old female who went into the hospital for a wound. She has no dementia, lives independently with a caregiver. She makes her own decisions. Other than being mostly a quadriplegic, she is healthy. Somehow, while in the hospital, her surgeon told her that her albumin was low, she was malnourished and unless she got a PEG tube, her wound would never heal. She eats normally, has no swallowing problems and is a very compliant/adherent patient who has great understanding of her health issues. Against her gut feeling, she let them put it in and came to my nursing home for rehab. I was very surprised to see her with a PEG tube because she definitely does not need it. As she told me the story I had a sinking feeling that I should have intervened. Unfortunately I did not know that she was asked to make this decision. Two problems with story, 1 medical, 1 relational-

The medical objection is to the surgeon's assumption that a low albumin reflects malnutrition causing a wound which can be corrected by PEG tube feeds better than oral feeds. First, the patient is not malnourished. Albumin has nothing to do with nutrition. There is no reason to think that a can of Boost via PEG three times a day is any better than a can of boost ingested orally.

The relational objection is that the surgeon did not take the time to explain to the patient to her level of satisfaction why the PEG was necessary. The truth is that he would not have been able to do so because it wasn't necessary but no attempt was made.

So what is the patient supposed to do? Gut feeling was that this was an unnecessary procedure, but how is she going to disagree with her surgeon? First, she could have involved her primary care doctor (me) and asked the surgeon to call me. She could have insisted on a consult with a GI doctor. She could have picked a doctor who cared about answering questions and making sure that decisions were made collaboratively.

When it is a caregiver making decisions, I think the dynamics can be even more complicated. Does the physician involve both the caregiver and the patient in a collaborative relationship? How does the caregiver balance risk vs benefit? What happens if the patient gave unclear instructions?

I hope to give somewhat of a guide with questions caregivers should ask in different settings, answers to listen for and statements to make that will communicate wishes clearly to physicians. I'll give it a go!