When dealing with a life-threatening illness, we need to know our options but we often also need guidance from healthcare professionals who know the territory. A caring and well-considered recommendation can be more helpful than asking us, "What do you want us to do?"
A good recommendation rather than "What do you want us to do?"
Much attention and focus in recent years has been given to the right of a patient to make the important healthcare decisions which affect the patient's life. (In situations where the patient is very young or incapacitated, the right to make healthcare decisions is generally a parent or family member.) Part of the movement in this direction is a response to a concern that in the past healthcare professionals made decisions for patients, assuming what was best for patients and not fully informing them of options for their medical care. Presently many are concerned that we may have overreacted and now ask patients and families to make decisions without the benefit of guidance from the experience and expertise of healthcare professionals.
Most of us want to be treated respectfully and want to preserve the right to make the important decisions which affect our lives. That said, we also want help and guidance. We experience this often in less significant areas of our lives. When our high-mileage car is in the shop for another repair, we wonder if this particular repair makes sense or if it's time to look for a new car. To help make this decision, we are thankful if we have a trusted mechanic who can give us an informed opinion about our options and a suggestion about whether or not it's time to start checking out the car market. Many pet lovers and owners come to a place where they look to their veterinarian for help in knowing whether or not there are effective treatments for their aging pets, what things they should be looking for and what are the ways to be merciful to their pets as their lives come to an end. In a brutally hot summer such as this one, we may find ourselves having similar conversations with our air conditioning repair company-is this a time to repair or replace? We know that the final decision rests with us and that we don't have to take the advice we're given, but to make such decisions we need answers to all three of the following questions, not just the first two: What does it look like? What are my options? What do you think?
As patients and families, we need the benefit of recommendations of healthcare professionals who know the territory. For most of us, the latter stages of serious illness or aging are unfamiliar countries. We haven't been here before and can feel lost and confused. Experienced healthcare providers understand that everyone's journeys are unique, but there are common guideposts, pitfalls, turnings in the pathways and crossroads. We need the benefit of that expertise and do not need to bear the burden of decision-making alone. To make good recommendations, healthcare providers need to understand and well consider the complexities of the individual and family and how these characteristics interact with the territory in which they find themselves. With sensitive consideration, a recommendation can help ease the burden of decision-making for a family. The patient and family can push back, ask questions, seek additional opinions and ultimately not accept a recommendation, and yet the recommendation can still play a constructive role as it helps clarify issues and facilitate an eventual decision.
On a personal note: When my mother was in the hospital for the last time with her recurrent and progressive cancer, her family physician told her that it was time for hospice. This recommendation was given out of care and a good understanding of my mother and her illness, and it was well-received and a relief. The recommendation eased the burden of this decision for both my mother and her family. My mother did not give up her right to decide but benefitted from someone who knew both her and her illness well enough to tell her that it was time. A well-grounded recommendation can be more helpful that asking, "What do you want us to do?"
Thanks to Laura J. Morrison, MD, FAAHPM, Baylor College of Medicine, The Methodist Hospital, Houston, TX whose presentation informed and inspired this essay.