The End is the Beginning…Life and Death with Dignity
If I could pick out a book about my NPO of all the books we have read, this week’s book would be the crux of my “why” I am doing the work. Could you indulge me in discussing my NPO and project a bit? The workshop I am designing for healthcare workers is called “The End is the Beginning.” Most of us live our lives moving forward, and most of us dream of the future and plan for it, but if you are honest with yourself until you have faced the death of a loved one, your future thinking is in terms of dreams and all the “good stuff,” right? I started this doctorate because I found myself working with people in the end, and yes, I know several 100-year-olds. In my decade of experience working at the end of people’s lives, I have noticed each year it seems that people accept their dying process later and later. We have become a culture of “there’s a cure for everything.”
The 100-year Life: Living and Working in an Age of Longevity by Lynda Gratton and Andrew J. Scott hits the nail on the head. We are facing what is called the silver tsunami, and we are not prepared. As baby boomers live longer and face money and health running out before their heart does, we will face a societal crisis. Gratton and Scott state, “Greater life expectancy is only good if life itself is good. What if life expectancy increases faster than the years of good health? This would lead to the Hobbesian nightmare of ‘an epidemic of frailty.’” [1]
It is funny to think we all want a long life but fail to see what really happens in the end. Without wishing to be too vulgar, I would love to title a podcast someday “Everyone’s butt (&#@) will need to be wiped one day.” We have categorized older people almost to the point they are out of sight, out of mind. So many of us do not consider “ADL” as we get older. “Morbidity is not just about disease; it is also about how people function as they age. A range of studies has examined what are called activities of daily living. These are activities such as bathing, continence, dressing and eating that have an important impact on daily quality of life.”[2]
What is difficult about getting older seems to be money, relationships, and autonomy. We spent ten days in Washington, DC, where our country fought for our freedom. We are a nation founded on fierce independence. However, we still need to gain the art of having intergenerational living. When we don’t walk alongside the generations older than us, we don’t bear witness to the end. When I talk with people facing the end of their lives, I ask them to think about the end. The 100-year life reveals the problems with money, autonomy, and physical and mental abilities the longer we live. When you take your last breath, I challenge you to ask yourself where you want to be and who you want there with you. If you know this answer, it speaks directly to decisions you make now, whether it’s healthcare choices, investing in long-term life insurance, repairing broken relationships, etc.
I could go on for so much more about this book. Jason mentioned it being a “one-idea book,” and I agree, but it is one of the most important ideas that every human on this planet does and will face. It’s pretty darn important because it is the one thing, the book, that speaks to every person on the planet.
I want to close out with information on the “Death with Dignity” Act. I will not try to persuade you in any direction of belief, but I think it exists because of the very thing this book is saying. First off, I want to say I have been present with a patient as they swallowed this medication, and from what I saw with where she was, her state of mind, the people in the room with her, and how peaceful and sure she was, it was beautiful and challenging. She had ALS and was slowly being “locked” into her body and was close to having to be 100% dependent on others without losing her ability to think. I’m not sure I wouldn’t make the same choice. Many people choose DWD because they don’t want to be a burden; they don’t have the money, or they do have the money but want it to go to their kids as a legacy; they have a disease that will be debilitating, like the one I mentioned. Below, I included a chart on how many in Oregon have accessed the medication (extreme uptick in last few years) and another chart that describes why people access this medication.
We are facing a silver tsunami. Since the pandemic, there have not been enough quality skilled workers in facilities to help care for patients. I don’t have data to back that up, but I have lived experience of walking through skilled nursing centers with empty rooms because there are not enough staff, and my husband works in a hospital where many are stuck because there is no safe place to send them.
I want us to take our own 100-year life and recognize (I’m going to be a wee bit socialist here, forgive me) but help our country fund Medicaid and Medicare so that we will have someone to wipe our butts! We must pay our healthcare workers more, consider hazard pay during pandemics, and (oh yeah, pay our teachers more!!).
Ok, I am done for now.DWD charts[3]
[1] Gratton, Lynda and Scott, Andrew J The 100-year life:Living and working in an Age of Longevity, (London, Bloombury Publising, 2020).Pg29
[2] Gratton and Scott, pg .30
[3] https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/policy.aspx
About the Author
Jana Dluehosh
Jana serves as a Spiritual Care Supervisor for Signature Hospice in Portland, OR. She chairs the corporate Diversity, Equity, Inclusion and Belonging committee as well as presents and consults with chronically ill patients on addressing Quality of Life versus and alongside Medical treatment. She has trained as a World Religions and Enneagram Spiritual Director through an Anam Cara apprenticeship through the Sacred Art of Living center in Bend, OR. Jana utilizes a Celtic Spirituality approach toward life as a way to find common ground with diverse populations and faith traditions. She has mentored nursing students for several years at the University of Portland in a class called Theological Perspectives on Suffering and Death, and has taught in the Graduate Counseling program at Portland Seminary in the Trauma Certificate program on Grief.6 responses to “The End is the Beginning…Life and Death with Dignity”
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Hi Jana,
I think your blog post should be added to Gratton and Scott’s book! Thank you for your thoughtful insights. I appreciated what you said about the Silver Tsunami and the lack of healthcare workers for our elderly populations. I think it is a common fear to be alone and unable to care for ourselves. I noted multi-generational living in my post as well. I think we in the West, with our independence mind-set, have lost something very important. With your work in hospice do you see more inter-generational living or does that just comes into play with end of life care? What trends do you see in regards to inter-generational living from a hospice perspective?
Here are the generational involvements I see, at least in Portland. 1. they have money and family “put” their loved one’s into nice and not so nice facilities. Some visit some don’t.
2. Those who are living with their loved ones, but out of necessity and/or no other choice which leads to burn out, compassion fatigue or resentment.
3. Those who are intentionally living multigenerational and have prepared for this situation. From all of the experiences I’ve had, I feel so priveleged to have my parents living with me before they really need me:) And while my kids are home..they are seeing the good, the bad and the ugly of aging and I hope give them a different perspective on life!
Jana, You touch on so many important ideas in your post, and you’re clearly within your field of expertise so I loved learning from you! The thing I’ll comment on is the idea of intergenerational living. We’re seeing a bit of a trend in our area – intergenerational houses or apartments where young people can rent a room very cheaply in return for living with elderly people, helping them out, etc. I’ve not met anyone who participates in this kind of situation, but I think it is an interesting solution to a growing problem. Have you seen anything like this in your area?
Jana,
I love the idea of intergenerational living. It does seem like we have lost the dynamic of families living in close proximity to care for one another and enjoy life together. I think about the portrayal of European families in movies (specifically Italian) where the Nona lives with the family and trains a younger generation in pasta making, hard work, life, etc. It saddens me when I talk with widows who have no family to spend life with or their family is so far away. I wonder if living like Jesus, in an upside down kingdom way, embraces the elderly in families and commits to caring for them, no matter the cost (time/energy/finances) until their last breath. An act of love for the One who gives breath?
Your title reminded me of a Smashing Pumkins song! The End is the Beginning of the End.
One of my favorite posts of yours! There is so much expertise and lived experience in what you are saying concerning planning, death, living longer while avoiding the topic, and DWD.
Someone asked me what the Bible says about keeping someone alive with life support, and I said, “Nothing”. Technology has created new ethical situations. We can try to find passages to guide us, but we are still the ones picking which verses we will prioritize and what interpretations to use. I put DWD into this category. Should we intervene and forgo months of suffering if we have the option? Should we intervene with technology / medicine or keep people on life support when we have the option? The ethical guideline for me is: what promotes life, and what relieves unnecessary suffering? Even still, these are incredibly hard questions when it’s your loved one. Thank you for sharing your thoughts and engaging this issue and others around life and death.
I love this post. One of my favorites.
This sentence was worth the price of admission: “When you take your last breath, I challenge you to ask yourself where you want to be and who you want there with you. If you know this answer, it speaks directly to decisions you make now, whether it’s healthcare choices, investing in long-term life insurance, repairing broken relationships, etc.”
I’m going to use this as a discussion starter with my wife. Seriously.
Jana, your whole NPO is so important. I can’t wait to see/read it; I”m looking foward to learning so much. Thanks for tackling this importnat issue.
It all reminds me of one of my favorite songs. If you haven’t heard it, listen to Jon Foreman’s “Learning how to die” Here’s are some of the lyrics…
I’m gonna miss you
I’m gonna miss you
When you’re gone
She says, I love you
I’m gonna miss hearing your songs
And I said, please
Don’t talk about the end
Don’t talk about how
Every living thing goes away
She said; friend
All along I thought
I was learning how to take
How to bend, not how to break
How to live, not how to cry
But really
I’ve been learning how to die