- Jeanne Lee
Post 38: Choosing Where, When, and How a Loved One Dies Takes Knowledge, Action, and Courage
Updated: Nov 17, 2022
Before I started working as a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I worked as a hospitalist. A hospitalist is an physician who takes care of a patient's urgent, acute, or serious medical issues in the hospital. The hospitalist then returns the medical care back to the patient's primary care physician when the patient is discharged from the hospital.
I remember starting a new stretch of seven days (I usually worked seven days on, seven days off) and picking up the care of a woman in her 50s, Ms. F, from the previous hospitalist. The only image I have of her is of her lying still in the hospital bed in a private hospital room. She was wearing an oxygen tube under her nose and breathing slowly with her mouth open. She had no fat. She had a body of indentations. She did not open her eyes for me, even when I shook her shoulder. "She's been like that the last couple days," her sister quietly told me from across the bed.
I remember feeling confused. She looks like she's dying, I thought. "I heard the oncologist wants to give her chemotherapy. Is this what you've heard as well?" I asked.
The sister - let's call her Rose - nodded her head. "Her oncologist came in earlier today and repeated what he said yesterday. He said he was going to wait until she became more alert and then give her chemo," Rose paused, "You don't think he's really going to give her chemo like this, do you?"
I looked down on my list of patients to see. It was the first day of another seven day stretch, and every patient was unfamiliar to me. It would take time to learn these patients and to admit new patients. The conversation I wanted to have with Rose would also take time (read Post 3: The Secret Sauce in Palliative Care...).
I can have an extensive conversation tomorrow, I thought, Besides, if the oncologist is offering chemotherapy, perhaps I'm missing something. Perhaps he really does expect her to recover. "I'm going to defer to the specialist on that," I said, "and we'll see where she is tomorrow. I'll touch base with him then."
"Okay," Rose said. She turned back towards her sister. "I hope I can bring her back home."
The next morning, I received sign out from the overnight hospitalist. "Ms. F died overnight. She was a DNR. I notified her sister. Mr. G complained of constipation and he didn't have anything ordered, so I ordered dulcolax. Mr. M spiked a fever..."
I remember feeling a brief intense moment of sorrow and regret for this woman who had died alone in the hospital; for her sister who had hesitantly questioned if the current medical plan was the best treatment for her sister (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2); for myself because I knew I would later be dwelling on "What if I had not postponed my conversations with the oncologist and with Rose?"; and for the unceremonious manner in which we were discussing the death of a fellow human being.
I have since learned that - when we have a choice - it takes knowledge, action, and courage from both healthcare providers and family members to choose where, when, and how a loved one dies.
The following are five steps to consider if your loved one is critically ill or very sick and debilitated in the hospital.
1. Think about your loved one as they were 6 months ago, and think about how they are now.
Many times a person who has been living with an illness, disease, or combination of illnesses has had a history of setbacks or flareups. At times they recover to a previous level of strength, mobility, and thinking. At other times they recover some, but not quite as much, ability to care for themself.
There may come a time when the setbacks are back to back. The person progressively loses strength, weight, energy, or alertness. These setbacks may occur over weeks to months at home. Or setbacks may occur over hours to days in the hospital.
If you realize how much your loved one has declined in the previous six months (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3; Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3; and Post 28: A Cloudy Crystal Ball - Predictors of Prognosis Part 3 of 3), imagine how your loved one might be in another six months.
"My brother was doing okay with his dialysis six months ago. He was tired a lot, but he could still watch his games. He could still get in his wheelchair and go out to eat with my family. When he started getting weaker and losing weight a couple months ago, he said he wouldn't want to keep living like that, that we had to figure out what was going on and fix it or let him go. Now he's been in the ICU for four weeks, he's been on the ventilator for half that time, and he has infected clots everywhere."
2. Ask your loved one's healthcare providers and specialists their thoughts on a realistic trajectory and prognosis.
Sometimes family members get a hint of what healthcare providers are thinking when medical teams say their loved one has a "grave prognosis" or "guarded prognosis." Healthcare providers often say this if they are worried that a patient may die during that hospitalization despite their best efforts.
Another big hint that healthcare providers are worried that a patient has a shortened prognosis is when they bring up the idea of keeping the patient comfortable or "focusing on comfort."
Sometimes as a palliative care physician, I meet with family members who are bewildered and overwhelmed by the treatment decision making authority that is suddenly thrust upon them by specialists.
"They asked us if we wanted to do the cardiac procedure that would fix his leaky heart valve and maybe improve his blood pressure. His blood pressure has been in the 60s the whole time he's been in the ICU, even with the three life support medications and antibiotics. What do you think?"
"They asked us if we wanted them to drill another hole in her skull to see if it would relieve pressure for her brain. How would I know? They're the ones that went to medical school."
"They said they could give chemotherapy if we wanted. What does that mean? I was so surprised I didn't have a chance to ask before they left the room. I don't know what that means."
When healthcare providers and specialists start to casually offer medical or procedural treatments without clear recommendations ("If you want, we can do this. It's up to you."), they are essentially saying, "We don't think this will make a significant difference in the outcome. We are going to put the ball in your court. You decide what you will regret least and give you the most comfort in the end."
The problem with this is commonly patients and family members (understandably) misinterpret these offers as recommendations.
"They offered this procedure. They must think it will work. Why would they offer something they thought would be futile?"
"They offered this chemotherapy. They must think it will help. Why would they offer something they didn't think would work?"
These casual offers confuse the picture, and realistically result in many procedures and treatments being done to people for the sake of "doing something."
Whether or not you get these hints, the best way to attempt to get a realistic idea of your loved one's expected prognosis is to explicitly ask for this information (read Post 15: What's My Heaven ETA? - The Who, What, Where, When, Why, and How in Asking About Prognosis).
Ask your loved one's primary medical team if they could speak with all the specialists and obtain their honest thoughts about how your loved one is doing, how much your loved one is expected to recover and to what quality of life, and about your loved one's prognosis (read Post 9: How Terminal is Terminal?). Set a time to meet later to discuss these healthcare providers' impressions.
"I asked my brother's ICU team if they honestly thought he would make it off the ventilator, out of the ICU, out of the hospital and rehab, and eventually home, where he could go back to enjoying watching his games. They said they didn't know. They're just focusing on keeping him stable in the ICU. Then they asked if I wanted to focus on comfort, which I guess means letting go of the machines and life support meds."
3. Keeping in mind your loved one's expected prognosis, formulate your most important goals.
People's wishes and goals of care frequently change as they receive updated information on how their body is doing, how their body is expected to recover (or not recover), and how much time their body might have. In the hospital, another crucial piece of information is whether their body is expected to become stable enough to leave the hospital.
With the most updated medical information, determine what your goals are now for your loved one (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2 and Post 37: "Do Everything" and Other Misconstrued Phrases).
"I promised my brother that I wouldn't drag things out. He wanted a quick death without fuss - his words, not mine."
4. Working with your loved one's healthcare team, determine if the current medical treatments are aligned with achieving your goals for your loved one.
It takes strength and awareness to step back and look at the big picture. When family, close friends, cardiologists/nephrologists/pulmonologists/neurologists/intensivists have been working so hard with a single minded focus to stabilize the vital organs and body of a loved one, it can be emotionally, mentally, and spiritually difficult to pause and question this single minded focus.
By this time, you may have a truer sense of how your loved one is doing from a medical standpoint. You may have thought about how much your loved one has declined from their illness. You may have given honest thought to their quality of life as it is now and what it is expected to be in the future. You may have modified your hopes, wishes, or prayers based upon the reality of the situation.
If the current medical treatments are aligned with your goals for your loved one, continue on with peace of mind knowing you are on the right path.
If the current medical treatments do not seem like they would help you achieve those goals, this is the time to ask your loved one's healthcare team, "What WILL get us what we want for our loved one?"
"My brother is dying. We're prolonging the inevitable. He wouldn't want that. He fought as hard as he could for years, especially now in the ICU for four weeks. I know what I DON'T want. I DON'T want us to continue doing this and then I get a phone call in the middle of the night that he died alone, hooked up to all these beeping machines. He deserves his quick, fuss free death. The intensivists said that if they got the breathing tube out and stop the life support meds, it would be quick."
5. If choosing where, when, and how your loved one dies is what is most important now, discuss this with your loved one's healthcare team.
If you have doubts about your decisions, ask the healthcare team if your wishes for your loved one are reasonable based upon your loved one's guarded prognosis and the family's goals to choose where, when, and how your loved one dies.
"I asked the ICU team if they thought it was reasonable if we kept the life support going - but no more labs, tests, procedures, or anything like that - until I could get family in. We have one sibling flying in from California. Then we could say our goodbye's and stop everything. Or as my sister put it, FINALLY free him from machines. The ICU team said that sounded reasonable."
Sometimes you are able to bring a loved one home and you know that your loved one going back to the hospital could very likely result in their not returning home (read Post 23: When to Consider Hospice Support - Example #1 and Post 27: When to Consider Hospice Support - Example #3). Sometimes you know your loved one is steadily declining, and your loved one has already told you that they would not want to go to the hospital even for emergencies (read Post 25: When to Consider Hospice Support - Example #2). If a loved one at home is experiencing worsening strength, appetite, alertness, and energy from their illness or disease, consider following the above steps.
Choosing where, when, and how a loved one dies requires obtaining knowledge that a loved one is dying; taking action and following the treatment path that would allow a loved one to die the way they would want to die given their current circumstance; and the courage to take each step.