"The doctors said he had a poor prognosis. That was basically it."
"They said he isn't doing well. So I guess we'll have to wait and see."
When a healthcare provider sees that someone is overall not doing well at home (losing strength, losing the ability to walk or care for themselves like using the toilet on their own, losing alertness and engagement in the things they used to enjoy doing, losing weight, losing the ability to stay stable outside the hospital) or not doing well in the hospital (doctors and other healthcare providers talk about a "poor prognosis," "guarded prognosis," or "grim prognosis"), they may start making statements about their worries.
"If she doesn't eat more or gain weight, she might need a feeding tube."
"Your lung disease is so advanced, I would be concerned that if you were to need intubation, likely we'd have a difficult time weaning you off the ventilator."
These statements may leave patients and family members anxious about future trajectories and unsure about how to proceed.
Healthcare providers receive training and extensive practice in discussing treatment options. They usually feel comfortable discussing the potential risks, burdens, and benefits of each treatment option (even if sometimes potential benefits are not great).
However, they rarely receive training on discussing what life could like if a patient (or a family member deciding for the patient; read Post 20: How Do You Make Medical Decisions for Someone Other Than Yourself - Five Common Methods) were to not choose a treatment option.
For example, a patient may get detailed explanations for starting dialysis and a list of potential complications and burdens related to starting dialysis.
"When kidneys stop working, people experience symptoms such as nausea and vomiting, confusion from waste building up, shortness of breath from fluid building up in the lungs, legs becoming heavy and uncomfortable from swelling, or possibly the heart stopping due to severe electrolyte imbalances. They get started on dialysis, which is being connected to machines several hours a day for three days per week, to try to relieve these symptoms and balance the electrolytes. If kidney failure were due to a long term issue such as diabetes or high blood pressure, likely that person would be dependent on dialysis for the rest of their life. Dialysis extends prognosis, on average, by several years if their only serious medical condition is the end stage kidney failure. Potential risks include, for example, very low blood pressure, fatigue, bleeding, infection, and heart attack."
However, this patient would likely not be given specific descriptions of what life could look like if they were to say "no" to dialysis, especially with the medical team's assumption that most would default to accepting dialysis.
This "other half" of the medical decision-making conversation is often the unspoken half.
"Some people say they would want dialysis if it came to it. They would want to try to live longer. Other people say they're at a stage in their life where they wouldn't want to have to leave their home multiple times per week to be attached to machines. They would rather have people come to their home, specifically the hospice medical team, as needed to treat their symptoms and keep them as comfortable as possible so they would not have to go to the emergency room every week for uncomfortable symptoms due to end stage kidney failure. The average prognosis for someone whose kidneys are no longer working is months, though it could much shorter or much longer for a particular individual. What are your thoughts?"
Most people would choose the treatment-directed path - such as dialysis, feeding tube, or breathing machine - because they would view potential benefits of these life-prolonging measures as outweighing potential burdens or risks (read Post 16: Medical Decision Making 101).
However, sometimes, when fully informed, people do decide to pursue the (normally undiscussed) alternate path of saying "no" to life-prolonging attempts.
"It sounds like her dementia has worsened significantly in the past several months based on what you're saying - she's no longer able to sit up in bed, no longer wanting to get into the wheelchair and interact like she used to, no longer paying attention to her shows, and no longer wanting to eat. It sounds like you're saying she doesn't have quality of life like she used to. A feeding tube with artificial nutrition will not reverse the dementia, and it will not give someone the strength, alertness, nor quality of life they used to have. Some family members may still want to see that they'd tried to make a difference with a feeding tube. Other family members may say that they want to focus on bites and sips for comfort and pleasure and keep their loved one comfortable, usually with the hospice medical team checking in on them, for the remaining time that their loved one has with us. What are your thoughts?"
"For some people who have end stage lung disease - and the lung specialists are saying that the next intubation may result in difficulty getting someone off the ventilator - they may say that they want aggressive breathing support with the increased oxygen and BIPAP mask up until the breathing tube. If - despite everything the doctors are doing with antibiotics, diuretics, steroids - the lungs could not improve and oxygen levels continued to drop or someone continued to lose alertness, and they had already said they would not want the breathing tube, then that would have to be the time when we honor their wishes and transition our focus to their comfort. We would give opioids to keep them from feeling short of breath and keep giving them medications to keep them comfortable until eventually it was their time and they died. What are your thoughts?"
Often, severely changing health forces us to make difficult decisions, either for ourselves or our loved ones. Sometimes, we are paralyzed by the fear of making the "wrong" decision (read Post 94: Medical Decision Making - Another Perspective that Might Help if You Feel Stuck). Sometimes, we are not told about all the potential paths forward, only the options to continue medical treatments directed at the disease (as opposed to the person living with the disease) (read Post 87: Are We Treating Me or My MRI?).
I see this often as a palliative care physician guiding patients and family members through difficult decision making (read Post 1: What Exactly Does a Palliative Care Specialist Do? and Post 99: The Realities of Palliative Care or "Palliative Care Can't Do Magic, But It Can Provide Clarity").
To be a strong advocate for yourself (or your loved one) and to obtain as much relevant data as possible to make the best decisions you can possibly make at difficult times in your and your family's health journey, you may have to specifically ask the doctors, "...And what would the other path look like? What would it look like if I said 'no' to this?"
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