This year I am celebrating my 26th year in end-of-life work. I started out as a Spiritual Care Coordinator, Bereavement Coordinator, and Volunteer Coordinatorfor a start-up hospice in NJ just after ordination to the priesthood. Since then, I have played the role of Educator, Director of IT and Project Development, CIO, Executive Director, CEO, and Hospice Liaison. I also opened a hospice in a rural town of the Pocono mountains in Pennsylvania for a friend whose daughter had worked for me in the NJ hospice.
Throughout these years, I believe my sense of what a good death is has shifted and evolved just about as much as that of our social/cultural conversations on what makes up a good death. Nuance has found its way into my understanding based on the many deaths I have witnessed and the many paths that have led to those deaths. I cut my teeth on Dr. Ira Byock’s DYING WELL and the FOUR THINGS THAT MATTER MOST both of which help organize the critical issues the dying – and the living – face when it comes to life’s close.
I have seen what I would call good deaths and what I would call not the best deaths. I have worked with people – the dying and their families – that could say the same. Mostly, I see the conversation around what a good death is, to be constructed of many layers and levels. Layers and levels – which I have always believed – I can help people discover and work with. Moving ahead to achieve the goal – whatever that may be.
A good death. What is it and how do we get one.
A good death is to be defined by the one having it – the dying. We might also include the people in close proximity to the dying – their community of support – and what they see as a good death for this person they are supporting as they no doubt have reciprocal influence with each other. So, let’s start there. What do you consider critical for your GOOD DEATH CHECKLIST? What about those in your community of support – what would they want you to add (if you dare)?
We can move beyond this initial definition and criteria that made it to your GOOD DEATH CHECKLIST – once it is finished. When it is complete, I will makesome suggestions of items I have seen routinely show up at end-of-life. Items you may want to work into your checklist after you hear them. So, first get your checklist started.
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Now that the list is started, let’s dive in a little deeper. Let’s Look at some areas I have noticed as critical in the lives of the dying and their community of support over the years.
The first item that makes up a good death is a good life. So, we cannot really wait until we are dying to be concerned about a good death. Some of the things we will need at our end-of-life must be planted and cultivated into our lives earlier on. Like now. Things that define a good life.
Elisabeth Kubler-Ross always said, “We die the way we live.” There is much truth in that. How we live will be how we die. Sudden, traumatic deaths are no different. If we live a good life (not a perfect life – whatever that means – but a good life) then our death will be had amidst a goodly environment. But there is the rub. Are we working on what it means to have a good life, so that when death shows up, we will have a good death?
It is a mindset issue. We have got to unpack what we believe a good life is all about. What makes a life good, or what makes a life better? So, here is your second checklist. What is on your GOOD LIFE CHECKLIST? What do you need to have a good life – NOW – not when you retire.
I learned this early on in hospice work – personally – because I saw so many people come to their dying having hoped they would have been able to have more time after retiring. More time to live the life they wanted to live. They were dying not having been able to live the way they had wanted to live. They had put living on hold so they could survive.
So, a big rule I learned early on, was to recognize there are no guarantees; and, if I want a good death, it starts now with creating a good life. A life I could die in. A life that was up to date on its living. I discovered that at 36. So, stop now and create that GOOD LIFE CHECKLIST.
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The good life we live is really the bedrock of what it means to have a good death. The degree to which we live a good life, will corollate to our dying – particularly in the case of an announced and gradual dying over a period of time. The way we live and the life we live is the foundation of our ability to define a good death for ourselves and those around us. I want to share some of the focused things I know about dying that would be good to build into living.
Some of the things we may find among the bedrock that would make a good foundation for a life well lived and a good death, are things to strive for early on in life to help us cope throughout the years. Things we can build upon over time.
What first comes to mind as paramount is if you have a daily practice that helps you look at your life – evaluate it – and become the person you strive to be. Prayer? Meditation? Stillness? Silence? Singing or chanting? Reading religious texts? Reading poetry or aphorisms? Self-help books? Some organized time and place where you enter into the workshop of the soul (I am not using soul as a religious soul term necessarily – but a central place in you of hopes, longings, desires, and dreams) and get a chance to look at yourself and become the soul you long to become.
One thing that became immediately clear as we entered the isolation and fear of the pandemic was that a pandemic was not a good time to try and build into your life a solid daily practice that feeds your sense of and ability to cope with difficulty. Although many people did try. The difficulty was upon us, and all of the attempts people made to find peace amid the chaos were not enough to establish a new muscle memory and the neural myelination needed to establish coping and satisfaction. If you had no path to peace before the outbreak, it was unlikely that you could build one in the center of the crisis. It was difficult even for people that had an established practice, but they had the language for the struggle – they had the experience with the struggle of the self already established.
This requires you be a person that wrestles with what it means to live a good life, not just at its end, but all throughout. And, that you be a person that believes in the ability and possibility to make changes in who you are – and as often as necessary. The people that have mastered this – in my estimation and experience – have always said, “you do it a little bit at a time”. Work on who you are, and at becoming better at who you are –EVERY DAY.
This sort of “program of the self” or ‘self-development” has often been relegated to the realm of religious or social communities that aspire to build character. Certain ways of living that will help the individual find a structured way to live and accept what life presents them with – coping with life. Today, with the deterioration of both religious and social communities, many individuals find themselves selecting pieces from here and pieces from there to establish a moral core and character the equivalent of a patchwork quilt. Regardless, the work must be done to craft a self, capable of living until death.
This daily work on the self must include a paradigm of the self so one can build with purpose. I think the thing most people can agree on when it comes to the self – when it comes to what it means to be a person –is that we are made up of a body, a mind, emotions, feelings, passions, dreams, and hopes (these last three make up what I call our soulful self). Each of these areas must be strengthened to make us whole and balanced. We need to feed the body, the mind, the heart, and the soul if we expect to be well. Simply defining these terms may be your first step toward building a daily practice that sustains the good life in you. So go back to that GOOD LIFE CHECKLIST and add some things about daily practices that you need to have in place to have a GOOD LIFE.
Some things you may desire to work on to help you build a self that is capable of dying might be: struggling to become patient, wrestling with delayed gratification, practicing love and practicingforgiveness, trying to walk, exercise, and eat consciously, learning to read regularly, finding stories that soothe you, being creative in a couple of different ways, listening to people without speaking, sitting in silence daily and listening to what your heart tells you, finding work that fulfills you – and leaving work that is killing you, establishing and working at friendships and family relationships that are wholesome, moving on when you need to, getting out into nature as often as possible, meditating or praying, traveling to places to expand your sense of what “self” can look like (even locally), finding a teacher and following their teachings – and changing that when you have outgrown it – crying, laughing, and chanting/singing.
Ok, so that is the beginning of the whole GOOD DEATH conversation. Two checklists and a daily routine for building a self which is capable of dying. Now let’s look at some of the nuance that will come up when you get toward the dying itself. Some other things you need to be prepared for that end-of-life workers see regularly.
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When you are closer to your own dying, these are some of the things you will want to be prepared for. So, start thinking about them now if you don’t have a current terminal illness so you are prepared.
Make sure that you have completed an Advanced Directive for your state. You can find one at: https://www.caringinfo.org/planning/advance-directives/by-state/
Or, you may find the Five Wishes to be a document m ore in keeping with your overall end-of-life wishes. You can find that at: https://www.fivewishes.org/
Once this is done, make sure that you let your family members and your caregivers know that you have one and where it is. Communicating this once you have a completed version is critical. You should also go over the document with your loved ones – including your POA (Power of Attorney). If you do not have one, be sure to appoint one. Do it now, while you are clear and alert.
Most people find it a part of their dying to have a solid collection of people around them. So, figure out who those people are. Make sure they know you want them there – tell them ahead of time. People that when you see them, they make you smile. Let them know they are YOUR PEOPLE. You can do this well in advance of getting to the end-of-life, or at the end. It does not matter.
Also, as the end draws nearer, be sure to have your people contact other folks that you want to know of your circumstance. Friends you need to see or want to say good-bye to. Be sure you have people around you who are not afraid to touch you because you’re dying – and on the shoulder, a kiss on the hand, or cheek, or brow. Also, make sure you reach out to hold peoples’ hands. They will need this, and you will too. We are connected in many ways, but as those ways weaken and subside, holding hands manages to communicate the same fulness of your person. It is a vulnerability that enriches and ennobles.
There might be people with whom you have been holding onto something, some grudge, need to forgive, or need to be forgiven. Get that over with now – DON’T WAIT! But if you have waited ‘til you find out you are dying, contact them well before you decline. Because, you will not have the same strength right up to the end, you will weaken and not be able to do things at the very end of your life. Don’t wait. Difficult emotions are not really a welcome sight at the death bed.
Get a box of old photos or a bunch of photo albums together now so you can have them around you when you are dying. Digital photos are not the same. Start collecting meaningful photos. Have those around for you and for the people you want there. It may seem silly, but one of the things that happens is that we all have moments where we fear what is going on and alsorun out of things to say.
Photos will be a great bridge to get through those difficult times. They also provide us a sense that all our lives are much deeper and much bigger than just this moment in time when we are dying. We have done more, known many, and been through so much that we tend to neglect bringing into our awareness of who we are – on a daily basis. This review of who you have been and where you have been is ennobling and deepens a sense of worth, meaning, and hope.
What’s on your bucket list. Do you know the things you want to accomplish before you die? Have you actually written them out, or, created a chart that helps keep them before you? If you haven’t, do it now. You will be glad you did. And then, get busy working on the list. One way we all measure good death is by what we have accomplished against the list of what we had hoped to accomplish. And, don’t forget to add soft goals like, become a better listener, or, do an act of kindness daily.
When will you have the hospice team come admit you to care services? Will you do it early enough so your whole family will be able to get the most out of the care? You will want to make sure that whomever is caring for you is well support and that you have people coming to the house from hospice to provide some of the care – so as to relieve your loved ones.
What baggage are you still carrying? What things are unfinished in your life? You will want to get rid of them before you leave. What do you think of when I ask that question above, what comes up for you? Make sure you get to that now. Don’t wait. Did you tell your grandson you loved his smile or were proud of him for his part in the play? That is baggage that should be addressed. Not just things you need to heal or mend.
So, look in that bag you have been dragging behind you in life; the bag you threw stuff in that you wanted to get to and GET TO IT NOW! This may be bucketlist items, or items to forgive or be forgiven, but THAT IS NOT ALL. Have you told your son his smile calms you? Have you told your spouse the journey has been grand? Have you told people you love them? That you want people to care for each other in their grief once you are gone? Those things – once given away – lighten us. THEY LIGHTEN US!
Medicines are going to come up at the end. You will most likely need medicine for the most common things we all go through in dying. Pain, agitation, restlessness, shortness of breath, anxiety, and constipation. Think about how you will be when offered these pharmacological means of easing suffering. How many times will you decline medicine so you can try a non-pharmacological attempt at ridding yourself of the above? What will you try to cope with the above? Meditation? Walking? Music? Massage?
Remember that suffering is not just the pain, agitation, restlessness, shortness of breath, anxiety, and constipation, but it is the inability to get rid of it. Medicines can help the body and mind let go of some of these common forms of suffering. Will you be accepting of them, or a barrier to their use?
There will be a series of changes at the end. All of them will revolve around your decline in your ability to be mobile, to stay awake, to do things you are used to doing. Thinking about the fact that you will go through many changes can actually help you prepare.
You may need to listen to books on tape instead of read if your eyesight weakens. You may need to just hold the rosary in your hands if you cannot remember the words. You may need to move your bed to the living room since you cannot climb stairs. So, how will you prepare?
What are the daily practices you want your people to know about and perform for you when you are no longer able? Reading scripture and praying the Shema? Listening to hymns? Holding meditation beads or a Tallis? Holding hands with loved ones?
What things will you want by your bed if it is moved to the living room? Family photos? Certain books? Icons, prayerbooks, yarmulkes? Also, what sounds do you want to be going on in your room? Certain music? Audio tracks of nature?
Would you like to have a Celebration of Life while you are still alive and well? Get all of the people together that you would expect to be at you post-death Celebration of Life and invite them to an evening gathering. Share songs, stories, memories, readings, and photos about you and your life. Be sure to make some good, open and honest communications with thepeople you will leave when your actual death arrives. It helps to get things ready for the end-of-life when you will not have the strength or wherewithal to go it alone.
I recently heard a comment about how we are able to view (or hear) reality and the path toward wholeness and acceptance for other people, in a different way than we are able to view (or hear) it or hear it for ourselves. That it is easier to say, “We die the way we live”, when it is for someone else’s death. But, if we are to have what we would call a Good Death, we have toassume for ourselves the same as for others, that we must prepare each day to become the person we hope to be, the person that can live until they die, and have a good death. That takes changes in who we are – ALL of THE TIME.
These are a few of the things I believe people need to know about the end of life in order to make that a time of grace and ease. There are also some suggestions to do well in advance to be sure that you are changing the nature of your life now. To have a good death, we all need to start to have a good life – TODAY! Don’t wait.
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tom has been and remains deeply involved in nature / ecology instruction and advocacy, food service management and cooking, spirituality, leadership formation and direction, painting, gardening, hiking and camping, dreamwork, fishing, tying flies, and photography.
tom loves authoring books (22), poems and articles (50+), stories, essays, and speaking before gathered participants to either read his works or teach. he dabbles in painting with watercolor and taking photographs. he and his wife Glinda just started a 501(c)3 foundation for poets – word hive: a space for poets. word hive is committed to the education, development, and collaboration of local poets; to awaken artistic expression in local communities. wordhive.org
tom lives in columbia, pennsylvania at 203 walnut street. tomjohnsonmedland@gmail.com 570-243-1047
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