Mr K was in his 70s. He had respiratory failure resulting from emphysema and double pneumonia, and though everyone hoped he would get better, it was just not happening.
Mr A was an 84-year-old retired handyman who had multiple medical problems. He had been falling repeatedly in the last six months leading up to his hospitalization, and his doctors were now concerned he might have ALS, or Lou Gehrig’s disease.
As a palliative care doctor, I was called to see both seriously ill men. But only one of them would receive the ‘good’ death he wanted – because of one key difference.
Mr K had been in the hospital for three weeks and his doctors had already talked with him about what would happen if his condition did not improve. Would he want to be intubated and resuscitated?
What the doctors really meant, but didn’t want to say, was that if he ended up intubated on the ventilator, he would never come off. He would be stuck.
Mr K’s wife got emotional and shut down whenever they discussed advance directives (stock image)
But their questions were met with blank stares, followed by denial, as his wife rushed the doctors out of the room.
When I first saw Mr K, he was lying on his side and drawing air with the high-flow oxygen cannula, a type of high-level oxygen delivery system that is only available in hospitals. His wife was sitting by the bedside, trying to catch a nap.
As I told them why I was there – that the medical team had asked me to consult because of the seriousness of Mr K’s condition – Mr K nodded, but his wife was clearly uncomfortable.
‘Mr K,’ I said, ‘your medical doctors have been talking with you about what if your lung problems do not improve, what would you want to do. Have you thought about all this?’
‘Yes, I want to donate my organs,’ he replied.
Mrs K began to cry and asked for the conversation to stop. I consoled her but, out of respect for her husband, needed to continue.
‘We are asking these questions because we are very worried that your lung problems may not get better. We have tried everything we can, and the situation has not improved. So we need to know, if your breathing gets worse, do you want the doctors to put a tube down your throat and put you on life support machines?’
‘No, I don’t think so,’ he said calmly. ‘I don’t think my body can take it.’
His wife’s tears grew louder and she pleaded with me to stop the conversation.
Dr Pan is a palliative care doctor who has cared for thousands of people at the end of their lives
Hospice at home was the best option for Mr K, who wanted to sleep in his own bed (stock image)
Because discussing end-of-life care is not an easy conversation, it is often left too late – or ignored completely by family members who are trying to protect the patient (stock image)
I understood her emotions – who wouldn’t feel sad for this loving wife watching her husband get sicker and sicker? But it was important we kept going. As I held her hand, she grasped me tightly, and I turned back to her husband.
‘I agree with you,’ I told him. ‘Given this situation, what are some of the most important things that you want to accomplish?’ I asked.
‘I just want to go home, sleep in my own bed, eat my own food. When the time comes, it comes.’
Based on his answer, hospice at home was his best option.
However, the next day, Mr K’s condition had deteriorated significantly, and he was gasping for air, breathing rapidly, delirious, and waving his hands in the air at some invisible object.
He died that night, missing his chance to go home and spend his last few hours in his own bed. Had he signed up for hospice care, his wife would also have been provided with bereavement support.
Because making an advance directive for end-of-life care is not an easy conversation to have, it is often left too late – or ignored completely by family members who are trying to protect the patient.
In doing so, they close the door on fulfilling their loved one’s final wishes.
Talking about these desires early often leads to a better quality of life, fewer unnecessary treatments near the end of life, and better experiences for the rest of the family.
Advance directives are legal documents (which vary from state to state) that allow individuals to specify their healthcare preferences in advance, in case they lose the capacity to decide for themselves later.
Goals of care in serious illness are sensitive and meaningful conversations that focus on aligning medical treatments with a patient’s values, priorities, and desired quality of life.
Unfortunately, advance directives are often perceived as ‘too early’, until it’s too late.
Mr A loved bowling and bowled almost daily when he was healthy (stock image)
He told his family that he valued quality of life and social interactions (stock image)
Mr A’s quality of life had been gradually deteriorating. After a series of falls, he now needed a rolling walker to get around, help with dressing and bathing, and was feeling fatigued and with heavy limbs. Doctors were now concerned about ALS, or Lou Gehrig’s disease, a progressive condition that is incurable.
Given the serious nature of his illness, I was called to see him. I learned that he loved bowling and bowled almost daily when he was healthy. He longed to return to the bowling alley, even just to watch and say hello to his friends.
His daughter, Jenny, also told me he had also been seeing visions of his deceased wife, which we knew to be a sign of near-death awareness.
Because of this, a few days earlier, Mr A and his family had completed his advance directive documents, appointed Jenny to be his proxy medical decision maker, in case he lost capacity in the future, and written a living will.
He told his family that he valued quality of life and social interactions, such as going bowling or to the movies. He would try an artificial feeding tube on a temporary basis if his ALS progressed but his mind was still good.
He decided to make himself ‘Do Not Resuscitate (DNR) and Do Not Intubate (DNI)’. This meant he would not want to be connected to any breathing machines or life support, and that he would want to die a ‘natural death.’
His directive made it clear he wanted comfort-oriented care and to die at home.
We talked about home hospice as a Medicare benefit and service that could support his goals. Many people hold the misconception that hospice is ‘a place’ you go to, and Mr A’s family were glad to find out that the vast majority of hospice care is provided at home, where the patients want to be.
There were moments of tearfulness, but also of hope, joy, and love. Mr A and his family had the courage to have these important conversations, and because of that, he fulfilled his wish to go bowling one last time with his friends before he passed away.
Patients need to be courageous enough to think about it and ask their doctors about advance directives (stock image)
Caregivers and family members must learn to be open to these difficult conversations (stock image)
I felt privileged to be part of this sacred space.
It is important for everyone, whether it’s patients, families, doctors, nurses, or other healthcare professionals, to learn the language when talking about advance directives and goals of care.
What is serious illness? A serious illness is any chronic, life-limiting condition that impacts life expectancy, daily functioning, and quality of life. It often requires complex medical care, may involve frequent hospitalizations, and affects physical, emotional, and mental well-being.
Examples include advanced stages of cancer, heart/lung/kidney/liver disease, neurological problems, and dementia.
What is the best approach to open conversations about advance directives and goals of care? Patients need to be courageous enough to think about it and ask their doctors about it. Caregivers and family members must learn to be open to these difficult conversations.
Acknowledge the emotional nature of the situation, and don’t brush emotions under the rug. I often tell my patients and families: ‘It’s OK to cry. Crying is a sign of strength. After all, we are not trees or rocks. We are human, and humans have emotions.’
People should also know that they can accept or reject treatment, depending on whether those treatments help meet the goals that matter most to them.
Ultimately, the type of end-of-life care the patients receive is up to them.
Exit Strategies: Living Lessons from Dying People by Cynthia X Pan MD is published by Rice Water Publishing
