Post 15: What's My Heaven ETA? - The Who, What, Where, When, Why, and How in Asking About Prognosis
Updated: Dec 12, 2022
Prognosis. Life expectancy. Survival rate. Outlook. Best case, worst case scenario.
Sometimes a person does not want to know. Or it does not occur to them to ask. "Wouldn't the doctor bring this up if this is something we had to think about?"
Sometimes neither a person nor their physician has brought up expectations, and the person reaches a place where they want to discuss where they are headed.
When might a person want to discuss prognosis or outlook?
Some people want all the data up front to feel as best prepared as possible at all times. "I need all the information I can get to make the best possible decisions."
Some people choose to initially focus on the big news, the diagnosis, and the action plans. "I don't need to talk about survival rates right now. I am taking this one day at a time."
Some people never get the life altering big news. They receive a series of long term diagnoses and experience multiple serious, but fixable complications that cumulatively affect their health over a long period of time. "I have a lot going on, but I'd been stable. I don't know why things are changing."
At any time a person wants to know as much as possible about their health, medical issues, or diagnoses, they have the right to know.
Often, a person starts to wonder what they should expect when they notice big changes in their day to day life. Change in strength, stamina, energy, appetite, balance, and alertness - especially the rate of change - is one of the most important predictors of a future trend.
"I used to work in the garden last year, and this year I need help to walk to the bathroom."
"I used to do my finances last year, and this year I can't remember if I've turned off the stove or turned off the faucet."
"I used to weigh 150 lbs last year, and this year I have no appetite and I weigh 130 lbs."
"I used to cook Sunday lunch when the kids came over with their families, and this year I barely have energy to do the dishes."
"I used to play guitar for my church band, and this year I'm sleeping day and night."
"I had never needed to go to the hospital my entire life, and this year I've gone three times already."
Why would a person want to discuss their prognosis or best case, worst case scenarios?
A person who says, "I've been wondering if something is being kept from me. I've been wondering if I'm dying" may be looking for validation that what they suspect is correct. They may be looking for a reason for why they can no longer depend on their body to work properly. They may want to talk about the process of dying. They may want to know how to prepare their family. They may be looking for the go ahead to start preparing themselves emotionally and mentally. They may want to discuss their beliefs about afterlife. They may want reassurance that they will still be taken care of when they are no longer aware of what is going on.
A person who says, "We're planning our vacation to Korea next summer, and I'm wondering if we should move it up." may be trying to balance pragmatism based on survival rates they read on the Internet and optimism that they can continue living life without physical restraints. They may be asking for assistance in keeping a bird's eye view of their life while living one day at a time and tackling problems one challenge at a time.
A person who says, "I can't work anymore. I can't drive anymore. How long do I have to live like this?" may be asking about future changes they should expect in their life moreso than literally how long they might have to live. They may be asking for assistance on how they can cope or find meaning with the constant changes in their life.
There are many reasons why a person might want to discuss what to expect for the future, each personal to an individual.
What questions should a person reconsider?
Sometimes it is hard for a person to point blank ask what is weighing on their mind. They might ask in a roundabout way.
"How am I doing?"
A patient - who is a fellow human being - may be asking in the least emotionally uncomfortable manner possible, "How much longer do I have to live?"
The physician - who is a fellow human being - might interpret the question literally as "How am I doing at this moment on this day sitting in front of you?"
It probably will not occur to the physician - who really is just another human being who also does not seek emotionally uncomfortable conversations and who probably has their own agenda of topics they want to cover and who likely feels time pressure to keep the conversation efficient - that you are asking a more significant question.
"Your blood pressure, your oxygen level, and your pulse are good. You don't have a fever. You're fine."
The person who receives this response then becomes frustrated by receiving what they view as a non-answer and disheartened by the seeming lack of understanding or casual attitude of their physician.
"He keeps saying I'm fine. I have cancer all over my body. What's fine about that?"
I have seen "Will I be okay?" interpreted as the following (and the responses varied according to how the healthcare provider chose to interpret this question):
"Will I get better?"
"Will I stay stable and maintain what I have?"
"Will I get good care?"
"Will I be able to take care of myself again?"
"Will I be able to manage this at home?"
"Will I be able to leave the hospital?"
"Will I see my dog again?"
"Did the scan show good news?"
"Did the procedure go as expected?"
"Am I going to live?"
"Am I going to die?"
and frequently the easiest interpretation to answer with objective data,
"How are my labs and blood pressure today?"
Reconsider any phrasing that does not explicitly convey exactly what you want to know.
Who should a person ask about realistic prognostic ranges?
Ideally a person has good rapport with their physicians and they feel comfortable asking any or all of them for their expert opinions on best case, worst case scenarios. Many specialists would likely defer to the primary care physician (PCP) unless the specialist is the primary manager of the person's most serious medical illness (for example, oncologist for active cancer; gastroenterologist for end stage liver failure; neurologist for advanced dementia).
The PCP and the primary specialists actively managing the most serious medical problems would likely be the healthcare providers to ask about prognosis and life expectancy. If a person were seeing a palliative care specialist, they could ask the palliative care specialist as well (read Post 1: What Exactly Does a Palliative Care Specialist Do?).
Where should a person ask about prognosis or outlook?
A person might have to set the scene. They should bring to their appointment several copies of a list of questions that are important to them.
"For people with my same disease, my same illness, my same health conditions, on average how long do they live?"
"What treatments could potentially make that longer? How much longer?"
"Could side effects from those treatments potentially make that shorter?"
"I used to be able to do chores and repairs around the house last year. This year I get short of breath taking a shower and sometimes I need help. What other changes do I need to prepare for?"
"Do you expect me to potentially have to return to the hospital if my disease worsens or from the side effects of treatments?"
"I've been thinking about dying. I want to die at home, but I don't want the kids to get scared. What do you recommend?"
When a person is being checked in by the medical assistant, they are usually asked, "Do you have any questions for the doctor?" This would be the time to give a copy of their questions to the medical assistant to pass on to their physician. Their physician can then prepare responses and mentally reorganize the meeting agenda prior to entering the examination room.
If a family member wanted to hear the answers to these questions, they could also be present in the doctor's visit. If everyone in the room had a hard copy, they could each refer back to the questions and jot notes as necessary. This would also minimize the risk of questions being missed.
The physician has their agenda, and the patient has their own. If a person knows they want time set aside to get meaningful answers to serious questions, they should prepare ahead of time and give the physician a heads up.
Waiting until the physician has stood up to head out of the examination room to blurt out, "How long have I got?" will likely not result in any meaningful discussions that day. In this situation, consider asking for a follow up appointment very soon to discuss this question. "I want my family to be here while we talk about this. Can I make a follow up appointment so that we'll have more time to talk and so I can bring in my family?"
Many physicians are not comfortable talking frankly about prognosis. It is usually not something they do every day, so each prognosis conversation may feel unfamiliar or awkward for them. Many have not received training to conduct a bad news or prognosis conversation. Many do not have experience because they avoid the conversation, whether it be due to personal discomfort, compressed time with each patient, lack of interest in practicing this skill, or unawareness of patients' needs to have a prognosis conversation.
Physicians are people who also need to be mentally, and sometimes emotionally, prepared to have a conversation about realistic expectations. This can be especially hard with those they have developed a close relationship.
If a person is prepared to talk, they would have the most success in getting the answers to their questions if everyone involved were given an opportunity to prepare as well.
How can a person ask about prognosis and expectations?
Reassure the physician that you would like to know all details, both good and worrisome, including prognosis. Some people do not want to know, and many times physicians act on this assumption.
If a person wanted to know, they should give their permission to the physician to talk about prognosis. Be specific with your questions, and ask specifically what you want to know the answers to.
A person can ask in terms of range. "Do you think I have months to years, weeks to months, or days to weeks?" or as one patient asked, "What's my heaven ETA (estimated time of arrival)?"
A person can ask in terms of events. "My family and I are making plans to travel to Paris next summer. Is this realistic or should we move this up?"
A person can ask in terms of tasks. "I don't know what will happen to my twelve year old daughter if something were to happen to me. Should I be making arrangements now or can I put it off until next year?"
A person can ask in terms of holidays. "Do you think I'll be carving the turkey next Thanksgiving or should I really just focus on Christmas this year?"
A person can ask in terms of milestones. "I want to meet my first grandbaby in seven months. What are the chances we can make this happen? I honestly want to know so I can plan how to be with her, in person or in spirit."
As a fellow human being, no physician can accurately predict when another fellow human being will die. The best they can do is give averages and ranges based on studies, expertise, and an understanding of how much a person's body has changed and over what time period (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).
A person can live much longer than the average. A person can live much shorter than the average (read Post 9: How Terminal is Terminal?).
Prognosis should not define a person's life. Prognosis should be treated as more data to help a person determine how they want to make the most of their life.