90% of people think it's important to talk about EOL wishes with loved ones.
27% of people have actually had these conversations.
1 in 5 said they avoided the subject out of worry about upsetting loved ones.
Majority say they want to die at home, but 60% die in hospitals/institutions.
It is clear that we have a problem about engaging in EOL care conversations!
Studies show that when loved ones engage in meaningful EOL conversations, 1. There is less guilt and depression for the survivors.
2. Thinking about these issues before a medical crisis, allows loved ones to make decisions based on values and wishes, instead of stress and fear.
3. Take time beforehand to discover what you want to address.
4. Seek guidance - either The Conversation Project or a Death Doula, that can help with education, knowledge and direction.
5. List of helpful questions that The Conversation Project suggest:
As EOL conversations can be uncomfortable, and hard to know where or how to start, The Conversation Project is a great resource for questions to get the conversations started. Here's what they suggest:
"Now, how do you begin a conversation? This list doesn’t cover everything, but here are some things you can say to start talking".
• “I need your help with something.”
• “Can you and I have a conversation about ______________?”
• “I was thinking about what happened to ___________, and it made me realize .”
• “Even though I’m OK right now, I’m worried that ____________, and I want to be prepared. Can we talk about some things that matter to me?”
• “Will you help me think about my future?”
• “I heard about the Conversation Project and answered some of their questions about things that matter to me when it comes to my care through the end of life. I’d like to talk to you about it.”
• “When ___________ died, do you think their wishes and priorities were respected toward the end of their life?”
"Here is a list of some other things you may want to cover when you talk":
• Do you have any worries about your health?
• What do you need to address to feel more prepared (examples: finances, property, legal documents, relationships, health care situations)?
• Do you have any fears, concerns, or mistrust about where or how you receive health care?
• Who do you want (or not want) to be involved in your health care?
• When you look ahead to the future, are there important events or dates you hope you’re there for?
• Are there kinds of treatment you would want or not want (examples: resuscitation attempts, ventilation, feeding tube)?
• If your health condition changed, when would it be OK with you to shift from trying to cure an illness to trying to enjoy the end of life as much as possible?
In this article, BJ Miller, whom is now a physician, shared that he's been on both sides of the doctor-patient relationship, and how an almost fatal accident was the beginning of his relationship with death.
BJ's story is very powerful. You see, in college, he and some friend thought it was a great idea to climb atop a parked commuter train. However, when BJ stood up, an electrical current entered his arm, blew down his legs, and then out of his feet, which resulted in the loss of both legs, around the knees.
The journey to physician - hospice and palliative doctor - began with his experience in the healthcare system, which is designed to treat diseases, and not people.
This brought BJ to want to encourage others to shift their perspectives about EOL.
Here are some of his thoughts on what really matters at the EOL:
1. Tease out the unnecessary suffering out of the system.
2. Tend to dignity, by way of the senses, the body, the aesthetic realm (which is design).
3. Set our sights on well-being, so life, health and healthcare become more about making life more wonderful, rather than just less horrible.
4. Become patient-centered, not disease centered - a human centered care model.
5. Caring becomes a creative, generative, even playful act- the whole person.
6. Create spaces that allow life to play itself all the way out, so that dying becomes part of the process.
Just think, if we as a society, transformed how we experienced EOL, we might begin to shift the narrative to just how profound and beautiful these events can be.
Conversations about death and dying are a crucial part of life. One doesn't need to be nearing EOL to have these conversations.
In fact, it's been shown that the earlier one engages in these topics, even if young and healthy, fear and anxiety is reduced, as there is time to process and think about EOL care wishes.
"Deficiencies in medical training, lack of confidence, limited time, and cultural barriers all contribute to the paucity of these important discussions".
When society looks at death as a "medical failure", we have a fundamental problem with how we (society) looks at death.
This illustrates just how needed these types of conversations are. Seeking those that are trained on how to talk about EOL will only help to benefit all of us.
When we see death as a natural, and normal, part of life, we then begin to experience it with more serenity and equanimity.
This isn't to say that there will be no sadness or heartache....honest, compassionate and effective EOL conversations won't remove these emotions. They will however provide opportunities for meaningful conversations among loved ones, so that the focus stays on the wishes and the comfort of the dying.
Ask your physician about how they approach EOL conversations, and if you feel you would like more guidance and education, then reach out to a death doula.
This article is on EOL Care Conversations in geriatric physicians. However, these points apply to all of us, regardless of age and health, whom want to engage in EOL conversations.
First, the physicians recognize that these conversations are valuable, yet this article states that very few actually have these conversations because of their lack of training and feeling unsure of how to have end-of-life care conversations.
Think about this....these are doctors, whom must of us look to for advice, yet they too, are uncomfortable on how to approach such topics. They also have limited time to spend with families, are uncomfortable of possible disagreements among family members and the patient, and not knowing when the time is right. It is never too early to begin these discussion, as we can then normalize these topics and begin to take time to process our wishes.
However, much training is needed for the physicians to have these types of conversations, as it's paramount to the well-being of the patients, physically, mentally and emotionally.
Death Doulas are a great resource, and if physicians and medical offices were willing to bring on DD's as part of their staff, these would be incredible resources that have been trained to have these conversations, and have the spend time answering questions and providing guidance.
In my opinion, we would then be meeting the needs of engaging in these powerful and profound discussions.