Pearl 4: When Should I Wait for the Family to Have a Serious Talk with My Patient?

Sometimes my medical colleagues say, “This patient is of sound mind and can make all medical decisions on their own,” implying a serious discussion about prognosis and life prolonging versus comfort focused treatments could be had with the patient alone.  This is true on paper, and it is appropriate in practice depending on context, decision-making stakes, and decision-making urgency.

Consider the following two questions when attempting to determine if the healthcare clinician should ideally wait until family is available even if the patient has complete medical decision-making capacity:

1.   Will this be an information-providing or decision-making conversation?

If a patient has full capacity to understand the conversation and relay the conversation (as much as they wish) to whomever they consider family, and the patient says they are ready to hear difficult information even without the presence of family, the clinician can proceed to have this conversation with the patient even without family present.

“The labs results came back, and I know this is not what you were hoping to hear, but they do indicate that you have HIV.”

“I have the MRI results, and unfortunately it showed what we were worried about. There is a tumor in the brain, likely metastatic.”

2.   If this will be a decision-making conversation, how urgently does the decision need to be made?

A patient with stage 4 cancer who still has the energy and strength to drive to and from work likely has “more time” of at least months to consider questions of if/when they should proceed with cancer therapy or life prolonging measures (with hospital and clinic level of care) versus letting go of cancer therapy and focusing on comfort and quality of life (with home hospice level of care).  

The clinician could likely share treatment paths with this patient, who would have the time and ability to return home and make big decisions together with their family.  The patient would likely have time to obtain input from their loved ones as they make decisions.  They would likely have time to amend their decisions as their health journey evolves.

A patient with stage 4 cancer who has now lost so much strength, stamina, weight, and alertness that they are primarily sleeping in bed 20 hours a day, losing significant weight, eating spoonfuls at a time, and requiring help with all self-care activities such as sitting up or toileting likely has “less time” of limited weeks.  There is a greater urgency for the patient to make life-altering health decisions such as whether to call 911 and receive hospital level of care the next time they were to feel uncomfortable (and risk not making it back home) or instead call the hospice nurse and receive home level of care, eschewing diagnostics to prioritize controlling uncomfortable symptoms. 

In this case, the clinician should first establish a time when all close family members and important decision makers are available to assist the patient in making such high stakes, or “life or death,” healthcare decisions before proceeding with a serious conversation regarding realistic prognosis and whether to continue the default "life prolonging measures" path with hospitalizations as needed or changing directions towards a "comfort focus" path with hospice support as needed.

Multiple reasons exist for why the higher the stakes, the more important family should be involved with the decision-making discussion even if the patient has full capacity to make decisions on their own.

a.  All major life decisions, medical and non-medical, are often made with input from our loved ones and people whose opinions we value.  Determining which college to attend, making the rank list for residency match, narrowing down the cities to interview for that first job as an attending, deciding how many children to have, discussing whether to retire – likely we asked our parents, mentors, close friends, spouse, and/or adult children for their input to help us make such big decisions. 

The same would likely be the case if one were attempting to decide whether to continue disease-directed therapies (for example, chemotherapy) or to let go of disease-directed therapies because they feel that the burden of continuing these treatments is now outweighing potential benefit.

“I would be okay with stopping dialysis.  I've lived a long life, and I'm ready to rest.  But I’m going to continue with dialysis for now because my daughter is not ready.  She reminds me that I’m doing this for my grandchildren, to remain a part of their lives for as long as possible.”

b.  Family often must hear directly from their loved one that their loved one is ready to take a "different path" in order to better accept "letting go" of life prolonging treatments.  Otherwise, the default mindset in the medical community and in our society is to pursue disease-directed treatments (for example, chemotherapy, immunotherapy, heart transplant) and life prolonging or life-maintaining treatments (for example, dialysis, ventilator breathing support, IV antibiotics).

“I don’t believe that my dad would have agreed to be a DNR.  He would never choose to leave us.  He must not have understood you, especially if you were using medical jargon. Or, perhaps he was so short of breath, he wasn’t paying attention to you.  Sometimes, he says whatever he thinks will get someone to leave him alone as quickly as possible.  I just don’t believe Dad meant it when he said 'yes' to not being resuscitated.  Please make sure I'm in the room when you question him again.  If you don't, I'll just reverse the DNR myself if anything happens.”

c.  Many patients with severe physical decline also lose the energy, alertness, or attention to engage in a half hour conversation to make complex medical decisions by themselves.  Often a close family member will end up being the patient’s surrogate decision maker when the patient loses capacity, and this surrogate decision maker will be able to more easily honor their loved one’s wishes if they have heard directly from their loved one what their wishes were, however difficult or unexpected.

“We always said we would keep going for as long as there was hope for him to be able to walk again, even with help.  But it sounds like now he'll remain bedbound no matter what, and we're pretty sure that's not what he'd want.  I know he fell asleep midway through this conversation, but he's always told us.  If we were to agree with the feeding tube now, he would be so, so angry with us.”

As much as we honor a patient’s autonomy and right to make medical decisions, as with most major life-altering decisions in life, the decision of whether to continue disease-directed, life prolonging  treatments or to transition to comfort-focused, quality-of-life prioritizing treatments often ends up becoming a family decision.