I have people call me from the hospital in deep distress. You can write the most thorough living will on the planet and still find yourself bedside with a scenario you were unable to conjure up just a few months before. And those scenarios are almost always really GRAY.
I think when we are thrown into the deep end we tend to rely on THE PROFESSIONALS. Take for example my roof. There are some obvious problems, like leaks and suspicious patches of peeling paint. I will have a few roofers look at it to decide what to do. If those roofers come back with "You definitely need a new roof, it's about to collapse" or "It'll do just fine for 10 more years if you do a patch job around the chimney". I can't very well wander around up there myself and figure it out. I have nothing to add because I have zero experience. I have to rely on the professionals. If they disagree I am by myself in a no man's land. Roofs aside this is exactly what happens in hospitals every single day.
People are required to make very serious decisions about medical treatments while relying on doctors that may very well be unable or unwilling to give them the information they need to make those decisions. I recently read a study where the longer you know your doctor the worse they are at being honest about your condition, instead choosing hopefulness. They are also much more optomistic about predicting how much time you have. And the ultimate tragedy, they continue prescribing treatments even though they are futile. They are unable to draw the line. Where does that leave their patients?
Take my friend whose mother at 78 was a very healthy active woman until she had a stroke that left her without the ability to speak coherently. It was clear to my friend that his mother could still think clearly but the words coming out of her mouth where out of her control. She was doing the normal rehab but then developed a very serious blood infection that if left untreated would kill her. The treatment involved a very risky surgery that she had a 50-50 chance of surviving. If she did survive she was in for a long, slow and very painful recovery. The ability to speak may come back thru a lot of rehab or it may not. What to do? This is when he called me. I asked him what he thought his mother would want. He didn't know. I asked if she was a fighter. He thought not. I asked about his father's ability to care for her long term. He said his father would do anything for her. I told him to get a palliative care consult. He did and aferwards was leaning toward not doing the surgery. They would rather bring her home and enjoy what time they had left with her. He called a day later and said his cousin was a doctor and had told them "Imagine a great foggy lake, you can't see across it. You need to put your mother in a row boat and give her the chance to row across the lake because if you don't you will never forgive yourself." And with that they decided to do the surgery.
To me, tagging "you will never forgive yourself" to anything connected to these conversations is unfair. We are all doing the best with what we have in front of us without laying these heavy trips on each other. There are plenty of surgical outcomes that one might second guess in hindsight.
Thankfully she made it through the surgery. The recovery has been long and painful and included a feeding tube for a bit. Initially she was despondent but eventually came out of it and is slowly rehabbing. Her ability to communicate hasn't come back yet.
Many of us will have to learn where to draw the line, either for ourselves or our loved ones. So how can we think about this ahead of time? Is it even possible to prepare ourselves?
In my personal life I think a lot about how temporary everything I hold dear is; life, friends, family, my health and the health of those I love. I remind myself of this as often as I can. This is a key step in preparation because I know that the moment is waiting for me at some point unless I die suddenly.
The other thing I ask people who are faced with these decisions is "What is the hardest thing about your present state of health?" My friend Elisabeth who is an oncology nurse told me about this important question. Perhaps it is being in near constant pain, or being dependent on others/a burden to loved ones, or perhaps it is being stuck in a hospital. Whatever it is, will having the procedure most likely bring you more of what is hard? And also "What brings you joy?" Will the procedure most likely bring you more or less of that? These questions don't get you out of the no man's land entirely but they give you some beacons to shoot for and some rocks to avoid.
There are some pretty on the money Palliative Care PSA's going around. One is "No holes without goals." This refers to treatment procedures that involve having a hole put in your body. Before that happens make them be clear with you about what the goal of the procedure is. If it is "more time" make sure it is the right kind of time. More time suffering is not what anyone has in mind, but unfortunately in the medical world "more time" is a goal in and of itself.
It is my hope that as we become better advocates for a quality of death, we will give doctors permission to be more honest and realistic not purveyors of false hope. Hope that leads us to make decisions that do not secure a death that is in line with the values by which we have led our lives.
I have been at this work for a couple of years and still can't seem to answer the question "What is a death doula?" succintly. Some common replies are "I am a non medical person that provides physical, emotional and spiritual support to dying people and their caregivers." Or "I am a different doula with every client I have." While both of these are true I don't think they do much to answer the "What is a death doula?" question.
I think it makes more sense to tell stories about my experience as a death doula. It's not succinct so it had better be an elevator in the Burj Khalifa in Dubai.
Frequently I get called from the hospital. I get the back story and find out why they called. Most people say something to the effect of "I don't know why I am calling I just didn't know what else to do." What they need me to be is an emotional lighthouse. Anticipatory grief can create chaos in waiting rooms. I see my role as being the calm presence showing them the way to solid ground. I remind them that they can do this and then offer them some tools.
If the person is very near death and in a sleep coma, I usually help them with ideas to change the room to a more calm and peaceful environment and offer some sort of blessing. This is a time when people appreciate having something appropriate for the moment put in their hands. I draw from many spiritual traditions and encourage them to make one of their own as well. One of my favorites comes from a book (and I'm sorry I can't remember the title-the death books are about 5 deep on my bedside table at all times). It was written by the friends of a man who was dying of AIDS:
"Thank you for the life of our dear friend. Thank you for the miracles that make him who he is. Thank you for the amazing life he has lived and for all he has been. Thank you that he will now journey to become a bright star. Help him as he sheds his earth garment and his pain and his sickness. Help him to journey freely unencumbered by these things. May the journey be blessed by the knowledge that he is loved and while he will be missed, we will always be able to see him in the stars. We put his life, being and transition into your hands the mighty god of the stars and all beings."
These prayers are helpful because when we find ourselves at the bedside of a dying loved one we can be at a loss as to what to say and do. I always encourage them to let everyone have some alone time with the person. Hearing is the last sense to leave so even though they are in a sleep coma you can still talk to them. This is helpful even in the deaths where there is conflict. I encourage people to say what is in their heart. I prep them to be able to speak their truth in a calm and measured way. It is equally important that after they have had their 5-15 minutes they need to let the person die in peace.
Sometimes people call and they are in the midst of making difficult medical decisions. Often their beloved has just had surgery and they have been given competing advice from the multiple doctors involved. One doctor says something like "There is nothing more to be done." The other says, "We can do this, that and the other thing." Understandably there is confusion. This is an instance where I can create the space for them to find their own wisdom. I ask "What matters to your beloved?" Often they say "They want to be cured." I ask if the doctors are telling them that this is possible? They say "They are really positive and hopeful. We are grateful for that." I have learned to be leery of 'postive and hopeful' in my line of work. I ask them if they trust the doctor. Frequently they say "I haven't known this doctor long enough to know." Or "There have been so many procedures I don't know who the doctor is." I venture that if they couldn't be cured what would they want? They usually say the person would rather be at home. 8 out of 10 people want to die at home.
The next step is helping them advocate for themselves so they can get the information from the doctors that they need to make these decisions. To help them get information I usually have them ask for a Care Conference or a Palliative Care consult.
At some point they enter hospice and are looking for support to make this experience their own. Topics people ask about include how the body shuts down and the kinds of things they can expect. How to manage their own anxiety around death and dying. How to balance the needs of the extended network of family and friends. Sometimes how to prepare a child for the death of a parent and how to invite them to participate in a way that feels comfortable for them.
I can do most of this work in person, over the phone/text messages. It all depends on the support system and how much experience and confidence they have around death and dying. And remember: it doesn't have to be a last minute call when you and your family are in distress. We can talk through these scenarious before the time comes so that your last moments together are calm and as close to what your beloved wanted as possible.
Are we on the 163rd floor yet?
I am a trained end-of-life doula. I provide guidance and support for individuals and families during the end-of-life process.