End of Life Wishes: a (simple) Letter Project

The Stanford Medicine Letter Project idea is simple:

Write a letter that explains what matters most to you at the end of your life, how medical decisions should be made, and who can make decisions for you if you are unable. A formal advance directive can be intimidating to some. This is a straightforward way to make your wishes known.

Every adult should complete advance directives..... and most would, if they could! Sadly, many take one look at the advance directive form and give up after the first two minutes of trying to decipher the medico-legal jargon.

You can use their PDF template to start or fill out the form on the website and print or email the result for yourself, your family, and your physician(s).

In my work in Palliative Care, I continue to be amazed by the number of people I meet who have never thought or talked about dying. It is a natural part of life, guaranteed. It is one of the only sure things that we all have in common. And yet, so few people feel comfortable discussing it.

I am also amazed at the number of people who have thought about it extensively , have clear wishes, but have never made them known.

Don't wait! Talk to your family and consider this simple tool to share your thoughts and wishes.

Source: https://www.youtube.com/watch?v=vApg3qAn55...

When the nurse told me "less is more"

I was called to the emergency room to admit a very ill patient. With sepsis and an MI, this frail elder probably wasn't going to do so well.

“He’s pretty sick, eh?”
“Yah. Poor guy.”

The nurse and I paused, resigned to the fact that this elderly man was nearing his end and there was little we could do to change that. I think we both sighed at the same time.

I entered the room and talked to the patient and the family at length. They showed me a photocopy of the DNR form he had signed years ago. He didn't have any kind of advance directive, and had rarely talked about the process of dying, aspects of medical treatment, or what his goals might be for the remainder of his life.

At home, he spent most of is time in bed. Mobility was a bit shaky with a walker so it was safer to stay put. Poor hearing, shoddy vision, and mild dementia made it nearly impossible for him to read or watch TV or to do much of anything, really. He still beamed during visits from the grandkids. His daughter told me that she thinks he had been depressed for a long time; every second day he would say that he was ready to die.

I stepped closer to him. The laboured breathing didn’t look any better close up. He did have the breath to tell me, “I’m dying.” When I discussed the various range of treatments from comfort care (treating pain and respiratory distress), to medical management (antibiotics, blood thinners), to aggressive medical therapy (maybe some non-invasive support for breathing), he said that he wanted to die.

Was he just feeling terrible because his heart had jammed from the strain of fighting off a systemic infection, something that would be exhausting and uncomfortable even on its own? Or was this an expression of considered hope for an end to his now languid existence?

It wasn’t easy to communicate clearly or in detail. I asked more questions, but he said little. Even with a raised voice, I don’t know if he could hear me. His family was uncertain about what he would want done. It was clear that anything aggressive was not right. With failed kidneys, I’d have to give an IV blood thinner (heparin infusion) with up to 4x a day lab tests to prevent worsening of the heart attack. His breathing might get worse and if so, could be helped by strapping a machine on his face to push and pull air in and out of his lungs. That seemed cruel.

But, should I still offer some minimally invasive things that might improve both quality and quantity of life? Antibiotics might help the breathing to get easier and give him a chance of surviving. But this might also just delay the inevitable, prolonging suffering.

I try not to be wishy-washy and give patients and families clear recommendations, but it is hard. When people’s values vary so widely, and there are several avenues that might be appropriate, I don’t feel I can make the decisions for them.

I try really hard not to push my belief in “less is more medicine” too far. I don't want patients to be denied opportunity for healing and improvement. Just as I feel very strongly about doing less of the unnecessary things and interventions that will give more harm than benefit, I also feel very strongly that patients should have timely and meaningful opportunity to have the tests and treatments that might really benefit them.

“What do you think he would want? Is that consistent with his wishes? . . . ”

After I finished talking to the patient's family, I confirmed the plan with the nurse. We would keep the antibiotics and a few heart medications, but for the most part emphasize comfort. I left orders for adequate medications for pain, respiratory distress, and restlessness, to be used regularly if needed. If he got worse, we would stop the antibiotics. I didn’t think they would really help him but his family wanted to try. Although they would not want to extend his distress, it was all pretty sudden and not treating potentially reversible things was different than ensuring he was comfortable while dying (when no reversible causes remained).

It felt like we had arrived at some understanding of the medical reality, the patient’s wishes, and the substitute decision makers’ needs. As I discussed this and explained to the nurse that it wasn't maximum medical therapy but that it seemed a reasonable approach. Nurses, especially those who've got experience under their belt, seem to have a kind of wisdom that comes from the direct care of patients like these.

She looked at me and said "well, you know, less is more."

My colleague, an ER-physician who was in the same residency program as me and knows my passion, was within earshot. She chuckled.

A big smile stretched across my face, and I started looking at my list to find the next patient.

Advance Care Planning Does Not Adversely Affect Hope or Anxiety

I sometimes have a hard time bringing up advance care planning, goals of care, and wishes around resuscitation with patients and their families. Is it because I'm afraid?

Nope! I've done it so much and make it part of the admission routine. And, I enjoy it because I think it is an amazing thing we can do to discuss and honour someone's wishes. Sometimes expectations are unrealistic but that is usually caused by lack of knowledge about what resuscitation can do and what it cannot; it is a pleasure to educate and also to provide my medical advice, as I would around any other issue.

Usually, it's challenging because the patients I see are often geriatric and this often comes with some barriers to communicating. Some of them are in a state of acute delirium. Some have advanced dementia or cannot speak due to aphasia from a stroke. A few have extreme deafness and blindness to the point where no aid can help us 'talk' clearly together. Many, in the big city hospitals, do not speak English or French (our National languages). Interpreters are sometimes available for other languages, but not often in a timely way, and few of them speak unique dialects that some patients have.

With those barriers, often we rely on their family members, usually spouses or children, to help translate or to help us understand what the patient's goals and wishes for end of life care might be. Sometimes it is very clear and has been laid out in an Advance Directive or in a conversation with family. But often, it's something that "never came up."

Families often find it distressing. Many say "in our culture, we don't talk about that." Or "oh, we don't want to SCARE mom or dad." I usually gently insist, reframe the discussion, and ensure they realize the importance and routine nature of it.

Discussing dying doesn't mean someone is dying, or that we are giving up on them, or that we will not treat them to the full extent that is appropriate.

Some doctors, who might be labeled as "too squeamish" to discuss goals of care, simply don't do it, which I think is unacceptable. Bur rather than call them names, we need to find out why they aren't having end of life discussions and empower them to feel comfortable and competent at doing so. Maybe they think it takes too long, maybe they worry they can't help the patient make an appropriate decision, or maybe they just need to have some mentoring to learn how. Most of the time they say "the family thought it would be too distressing."

Fortunately, this issue has been explored and we should fear not: Trying to avoid causing psychological distress isn't a legitimate reason to skip talking about end-of-life care!


Studies, like this latest one in The Journal of Pain and Symptom Management, show that Advance Care Planning doesn't make people hopeless or anxious. [you'll need an institution subscription to access the full accepted manuscript, though the abstract is pretty clear]:

Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients’ psychological well-being.

To provide patient-centred care, we need to talk to patient (or their substitute decision maker), not around them. If you are a health care provider, don't be afraid; ask them head on about their goals of care and make recommendations about what is or isn't medically appropriate. You can do it!

Source: http://www.jpsmjournal.com/article/S0885-3...