Category Archives: chaplaincy

Dying well… one of the most important things you can do

This is a general summary of a talk I did at First Congregational Church in Oshkosh, WI on November 27th, 2016. It is part of a three part series on End of Life, Dying, and living into the seasons of Life.

We are going to be talking about dying and end of life. Please sit with that for a moment. What does it do to you? What feelings rise up in you as you consider the end of your life or the idea and reality of death?

There are a few things I do not know, a few things I do know, and a few things I have seen enough that I am very convinced of. What I do not know is what will happen after I die. I mean, really, how can I know this for certain?!? Yes, I guess there are stories of those who have died and come back. You can believe what you want to about them, but I’m not certain. What I do know is that death happens only once and it is as much a part of life as being born. It is literally woven into the fabric of the Earth. I also know that life itself is dependent on death. The very soil that feeds the plants that feed the animals and so on is made up of dead material. This gives me, as a Nature guy, significant meaning. My body is going to become compost one day and is going to give life to other living beings! This may not work for you. That’s ok. We each have our ways of making meaning of this experience, and that is what we are talking about.

The thing I am thoroughly convinced of is this: Over the course of our lives, we are putting together a story of what it is going to be like when it is our time. Both positive AND negative. Every experience we have affects how we will feel about our own death. So if we have loved ones who have died with pain and suffering or afraid and resentful, this is going into our consideration that this is what death will be like. If we have people we know who have died with grace, peace, and surrounded by those who they love, this will be added to our story. THIS is why how we go about our dying is perhaps THE most important thing in our entire lifespan that we can offer to those who come after us. This affects our community, our family, generations to come. Stories (the stories that future dying ones tell themselves) are told about us!

Stephen Jenkinson says that dying is never an individual event. Every death is a community event and it has ripples that extend farther than we can fathom. For generations to come and, depending on what you believe, from ancestors before. We get one chance to do it right… or I would say, well enough.

If you could put your experience into five words, how would you do that?

You’ll have to bear with me as I try to put these things in linear form. I am used to talking about these things with one person or a family and they come in response to their own story. Each idea comes with 45 minutes of dialog and our time is so limited here. So I am offering a few ideas and hoping some of them are helpful.

It used to be that people would die in the upstairs bedroom with family all around. It was more of a natural thing. But now it happens behind closed doors and the doctor comes out and tells the family that grandma has passed. So a lot of people don’t know what to expect and what might happen. The perspective you’ll get from a chaplain is much different perhaps than one you’d get from a doctor. I think we have to remember, and I tell patients this all the time, doctors are trained to heal. It is their mission to fix. I have seen there really is as much variety of feelings about end of life, and levels of comfortability, in doctors as there are in patients and families. You’d think that if a doctor is around death so often, they’d be more comfortable with it but this is not always true. But dying is not something to be fixed. I hear from medical staff, “So and so is depressed. She wants to die. Call the chaplain and get her some antidepressants.” But so often this is someone who is 95 years old and is all alone! I tell her she has every good reason to want to die. This is ok. Sometimes our spirits and our minds are ready to go but the body is hanging on.

Some people say we should live until we are dead. They don’t want to know about their dying. So they want to go out in their sleep or end their life prematurely. Stephen Jenkinson says it’s not the being dead they are afraid of but the dying. “How connected is someone to their life when they have to be told they are dying,” he says. I have said it before and will say it many times, dying happens to all health, mature, and connected to the Earth beings. It is a physical AND a spiritual experience and the more connected we are to the NATURAL way of things, the more we will be prepared for our own death. But that is the topic for the next talk.

Why is it so difficult to die?

I wish this were an easy answer, but unfortunately there are countless reasons why people have so much trouble dying. There are a few things that I am fairly certain about and that I have found that resonate with patients and family members. More often than not I find that people really DO have a difficulty with dying. Whether it be fear, denial, anxiety, or just avoidance, there is an underlying difficulty with dying.

Many people aren’t so much afraid of being dead, as they are of dying. I say this with intention, and I offer this to patients, in order to make a distinction. I have read in numerous places that it is best to think of living until we are dead. If we don’t then we could get depressed or think that our life is over as soon as we admit to dying. Think about it this way. “Dying,” an active tense word, is very different from the words like “dead” (adjective) and “be killed” (passive tense). There is no passive tense of “dying.” It is active, and so there for something we DO. It is something we live in, participate in, and include others in. So how do people want to go about their dying time? This is a good question to ask of people and to reflect on ourselves. We don’t just live until we are dead. These are the people who want to go out in their sleep or want to end their lives prematurely. There is no active participation in their dying there.

For many, unlike our ancestors, being around death and dying can be a very foreign experience. It used to be that loved ones would die at home attended to by family members in the upstairs bedroom. Now it is so often in a hospital or nursing home behind closed doors. The announcement comes from the RN or the doctor and the family comes in after a person has died. So many are not familiar with the signs of dying. They think a dying person may be on the road to improvement when they wake from days of sleeping and not eating and want to tell stories. These moments of clarity are often part of the dying process. Dying also is a very personal experience, different for each person, and something that each person can only go through once. If a dying person doesn’t share what it is like with their loved ones, they offer little of help to the next generation when it is their turn. But people are afraid of causing too much hardship to their loved ones by talking about it too much.

Dying in the hospital is very difficult because health care professionals are trained to cure, to heal, and to “fix.” In and of itself, this is not a bad thing at all. But when it comes to dying, there is no “fixing.” I have heard doctors say that having a palliative care team meet with a family is “giving up too early.” I have seen many many times doctors and nurses shy away from using the “D word” with families when the writing was clearly on the wall. Many will say a person who is accepting their dying is “giving up” or someone who is feeling sad about saying good bye is “depressed.” Too, too often do doctors trying treatment after treatment until a patient, who wants to die at home ends up unconscious while still hoping along with their family that they are going to “pull through.” Or a patient holds off  going home on hospice because a doctor or social worker feels trying out rehab first might be good, only to die the next day at the nursing home. I tell patients if they want to be an active participant in their dying experience, join hospice while they still have the capacity to choose for themselves.

If we can just begin to see how much death is a part of life. Dying is not a “bad” thing. It is a beautiful, sacred, natural thing. Not to say it is a “good” thing either. It just is. It is part of what happens to all healthy, mature, and connected to the earth beings. Going from living to dead is going around this natural process. As Stephen Jenkinson wonders, “How connected is someone to their life when they have to be told they are dying?”

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Readiness in dying

In my work in the hospital, dying is such a common theme. Something about being in the hospital, whether one has a terminal illness or not, brings about questions of one’s mortality and readiness to die. It really is amazing that something that people think about so often, or resist with such stubbornness is such an avoided subject by many medical professionals. I have been in so many conversations with medical teams, families, and patients talking about end of life, comfort care, and palliative care where the words “death” and “dying” are never mentioned. Why the awkwardness, why the fear? I think there is definitely something going with the doctors and nurses that I will address in other posts, but I would start with what I have been offering patients and family members these days.

I think there are three areas people become ready to go about their dying: their mind, their heart, and their body. Often times, especially when someone is younger and dying of cancer, their body might be saying, “It’s time,” but in their heart and mind, thinking and emotionally, they are far from ready. They have things to do, kids and grand kids to spend more time with, fears of the unknown that they hold on to. This so often makes for a lot of suffering. They pursue extreme treatment, their family members get alongside their efforts for more time, and doctors very readily do everything can to keep someone alive. But their body is saying it’s time.

The other, and perhaps less common situation, is when someone’s body is strong and in their heart and mind they really want to die. I see this with women and men in their 90’s who have no one left. Their parents died half a century ago, their spouses have died, some of their children have died, and all their friends have died. They ask me to pray that they would die soon. And yet they keep on living. I think this is getting to be more and more common with so many life-extending practices that we have now. This is a different kind of suffering, and I see doctors and nurses responding often with, “This patient is depressed.” I often remind patients (and staff) that wanting to die is not necessarily being “depressed.” It is not always “giving up.” Assuming this desire as such, minimizes the experience.

So ideally, our heart, mind, and body would be in sync when it comes to our dying time. How do we as those who may or may not be dying get to this place? Stephen Jenkinson writes that someone must be very out of touch with their life if they have to be told that they are dying. If we are paying attention and unafraid, we will know. The body has a wisdom of its own and knows when it has had enough. We would also do well to begin contemplating our dying and preparing for it as soon as possible. Why not now? I will tell patients it’s never too early to begin thinking about how we want our dying time to be. If only we can include our loved ones in this conversation, wondering and dreaming with them, recognizing that it is a part of life, not a bad thing. And one of the greatest gifts we can offer our children and grand children is a gracious and honest look at death so they have something to hold on to when it is their turn. This is a sacred thing to pass on. It is legacy. It is holy. And in this act we will be remembered.

Death defines me

The title should perhaps read, Death (Re)defines Me and Us. As a chaplain, and perhaps more specifically, as a human with my particular “Soulcraft,” I think about death daily. It happens to be my road in life to walk alongside those who are dying, wonder with them what death asks of them and of us, and to seek to understand death as best I can. As Stephen Jenkinson teaches, if we didn’t have death, we wouldn’t have life as we experience it. Our appreciation for a flower is very much affected by the knowledge that this particular flower will not be here forever. Our appreciation of the summer is only in the context that summer will change into fall and then into winter. Death does not have to equal trauma, death does not have to equal “giving up,” and death does not have to equal bad. Death IS real and we all will come to our time when it is our time.

My body will nourish the earth one day. I will become the literal compost of new and becoming life.

The difficulty of describing how this lands in my life is palpable. Living and dying is such an individual experience. Each of us has our own take… and to assume I know what it is like for another is ludicrous.And yet, we are so connected. So connected. We as humans have done the earth wrong in a million different ways by forgetting this, by living as if our living and dying is not part of the bigger thing.

For me, I want my to be as aware of my dying as possible. I will tell any who will listen (and perhaps some who won’t) what it is like and how it is to die. Especially my children, and those who I am blessed to elder in their growing and learning. Perhaps one of the greatest gifts I can leave behind is what it is like to go through this particularly individual and uncharted territory, so that when they go through their dying time, they might remember one who has been there before.

I forget sometimes, in any given moment, that I might not be alive in the next moment. Unlikely, perhaps, but things can change in an instant and we do ourselves and others we are blessed to journey with, a deep service to remember this. Life and death, both are good and beautiful things. As Richard Rohr says, “Everything belongs.”

My body will nourish the earth one day. I will become the literal compost of new and becoming life. This is where I belong in the circle of life. The earth gives me life and one day I will give her life. What does this do to us to feel this? To know it deep in our bones as we walk this land? In the depth of our lungs as we breath into our being? To eat our food, each plant and animal having had to die to sustain us?

The One thing I would tell everyone

Kat asked me last night what I think is the most important thing that people need as far as spiritual, emotional, and health support. This is something we think about a lot in our soul crafts of spiritual support (me), yoga teaching (her), and resilient community building (both). I thought long and hard about what I have learned so far in my many, many conversations with patients and spiritual seekers, people in pain and people who are thriving.

There are so many stubborn people. Men and women who desperately cling to how they have always done things, how their church tells them they should think and believe, how the supermarkets advertise, or how their families pressure them. They resist change and they suffer. I want to grab their faces in my hands and ask, “Do you really feel this way? Do you really think that? Does eating this or that really make you feel good?!? BECAUSE YOU DON’T HAVE TO!! Listen to your heart. Listen to your body. Follow it’s lead.”

People need to be affirmed, honored and celebrated that they can trust their heart, that they their personal experience of Divine love is valid and worth something. Ironically to follow the crowd, to feel the pressure of the system or the hierarchy to think and feel a certain way without the affirmation of one’s uniqueness is a profoundly lonely experience. How many pastors really want to say the things that they feel they must say so as to not make their parishioners too uncomfortable? Why do we twist, bend, argue, and force ourselves to believe in a God or a way of living that when we really listen to our hearts doesn’t feel good or compelling at all?

Your unique and personal experience of your soul, of Spirit, of transcendence, is worth something. It is important and valid and true to you. It is written on your heart. I want to know about it. I don’t want to know what someone else has told you that you have to believe, I want to know what you feel, wonder about, and live by. And I hope that at least in my company, you will feel free, unfettered, and fully welcome.

May you recognize in your life the presence
Power and light of your soul.

 May you realize that you are never alone,
That your soul in its brightness and belonging
Connects you intimately with the rhythm of the universe.

 ~John O’Donohue