We in the palliative community have learned through painful experiences that there are no shortcuts when end-of-life decisions need to be made. There are no quick fixes to decide about a feeding tube or about discontinuing care or considering hospice.
One highly effective way to address the issue of how aggressively to continue care is with a family conference (with or without the patient present).
During the meeting, typically a cascade of feelings and emotions and often hidden agendas come tumbling out among multiple family members. At the end of the meeting, a bottom line is quite clear when the answer to this question is considered: “What is the best decision for the patient’s well-being, rather than what decision do I, as a family member, want for the patient?”
Ah, but what happens when wife number one wants the respirator turned off (“Enough is enough”), and wife number two demands a full court medical press?
Without guidance from an advance directive, and if the patient does not have capacity to decide and has not appointed a healthcare surrogate, then family conflict about the course of treatment quickly becomes quarrelsome.
In these cases, we gather the family and medical team and have a clear discussion about milestones that need to be reached to tell us about the relative futility of continuing some of these medical interventions. (Milestones include weight gain, ability to be awake more hours of the day, increasing ability to get out of bed, for examples.)
If you are faced with these types of agonizing decisions, it’s important to engage the patient, if able, in these discussions so that there is complete transparency of the decision-making process. I’m reminded of the all-too-typical scenario where we on the care team have a serious end-of-life discussion around the bedside with the patient and the family. We then walk into the hallway and are followed by a parade of family members who say, “Okay, Doc, tell me what’s really going on.”
When this occurs, the medical team respectfully returns to the room so that the patient understands there are no “hidden deals” and all the facts are clearly on the table.
We on the medical team give our patients our best advice and work with the patients to honor their wishes and guide the next treatment step (knowing that sometimes that next step may be no treatment at all). But when family members speak for the patient and disagree and bring belligerence and aggression to the family meeting, those of us in the white coats find it very difficult to work in these situations.
I will confide this to you: We often push back in these confrontational settings. Not that we’d go along with another MRI just because Junior plays doctor and thinks Dad needs one, but we cringe in horror at the family dynamics, the one-upping, and choose to remove ourselves from the soap opera playing out over the deathbed.
Time is better spent talking with Dad about his hopes and expectations, relieving his pain and suffering, and not indulging a know-it-all kid (or adult) with a laptop and Wi-Fi.
Edward T. Creagan, MD, a cancer specialist, is the first Mayo Clinic doctor board certified in hospice and palliative medicine. His new book, Farewell: Vital End-of-Life Questions and Candid Answers, is about navigating those precious last days, at the bedside, and saying farewell with hope, love, and compassion. For more, go to www.AskDoctorEd.com.
We had a situation like this in our family. When the care team communicated that our loved one, who was on a vent, incommunicative, was starting to experience organ failure, was in pain, and by continuing to try aggressive treatments would cause more pain, that was when everyone agreed.
Yes, gone are the days when the average person accepts the word of a doctor as if it were the voice of God. People want to do their own research, be involved in their own medical care and the care of their loved ones, and rightly so.
After caring for a loved one over many years, others who seemingly have forgotten their loved one perhaps over years, a decade or more, suddenly appear. At first there is relief the loved one will feel comforted by their presence. Yet as hours and days pass, the ruckus, the opinions, etc., become difficult to bear.
In the interim the one who cared for their loved one is experiencing anticipatory grief and feels ever the more isolated.
This is especially true when long lost loved ones do not have a relationship with one another.
It positions the loved one who is transitioning in a confusing place.
You remain quiet, while inside wish they could see their loved ones need for solitude.