This post Reframing our Conversation and Perspective on Death and Dying is written in partnership with Providence St. Joseph Health
Being a blogger and having a job as a social media consultant I know there is nothing that can tank the conversation and the “we need to pretend we are happy and cheerful and successful and DEFINITELY NOT AFRAID” like bringing up the subject of Reframing our Conversation and Perspective on death and dying.
Unfortunately for me both the slow and painful process of watching my father die at the tender age of 68 in May 2011 followed by the quick and completely unexpected passing of my mother in February 2017 at the tender age of 68, has thrown me deep into the depths of the grieving process in a way that is hard to articulate.
It's crazy how everything seemed to STOP for my siblings and I once my father died and yet everything else seemed to move ahead. And that's the thing about this world- the deaths of the ones we love most are the private pain we carry around with us.
Although in Jewish law we are given a year to fully grieve- I don't think there is any finite amount of time that I can place on my grief. It hits me at the oddest times-like when I'm walking my dog and I see an older guy, with really baggy jeans wearing a trucker hat ( my dad LOVED to wear trucker hats even though he was never a truck driver) and for a SPLIT SECOND I think maybe it's my dad- and then I'm jolted back into the present and I realize it's someone else's dad.
Even though we were somewhat resigned to the fact that we would lose my dad to the diseases that ravaged is body, with my mother- it was a literal shock to the system. There was no warning.
When it comes to Reframing our Conversation and Perspective on Death and Dying for us There were no conversations. Despite a period six years between their deaths there was no closure or even mention of death and dying other than freezing at the mere thought of it and panicking about the impending doom if it all.
I spent so much time ruminating and thinking- are my friends telling their parents how much they love them? Did they just have a stupid argument with them? Are they having conversations about how they will approach death and dying?
Or like us are they terrified at the mere thought of its existence? Because those are the thoughts that run through my head. Because I never truly had closure with either of my parents I also replay the worst memories I have over and over again- and wish I could have a do-over. I want just five more minutes to look my dad and mom square in the eye and tell them, ” Daddy and Mommy I was such a spoiled brat. I didn't understand you, I didn't understand all the hardships, all the sacrifices, all your unfulfilled dreams.
I didn't appreciate how unconditional your love was, I couldn't fathom that there would be a time where I'd want to pick up the phone and gush about something that only YOU WOULD CARE about- and that there would be no one else who I could share it with. I didn't CHERISH YOU ENOUGH. DIDN'T SAY THANK YOU ENOUGH.”
Of course I want to believe there are small signs that my father and my mother are spirits that hover over me- and if I can be totally honest- not a day goes by that I don't mention their names. Like when my husband gets into the car after I've driven it- and he has to move the seat back at least ten feet I'll say, ” I know, I drive with my tits right?!”” because that's what my father used to say to me all the time. He had this wickedly dry sense of humor– and
I know it was what sustained him through the painful parts of his life. I rely on that humor to get me through the really crappy moments–and I think of something ironic my dad would say and I smile. Like today when I bought something on sale I remembered how my father would look at me and say, “these sales are killing me”.
So many moments spent with my dad and my mom and yet I feel like we just didn't have enough time. I needed more time. I think back to the last time I danced with my father- I think it was at my wedding and I wonder why didn't I dance with him again? I think what I wouldn't give for ONE MORE DANCE with him. So I'm trying to be cognizant of that in life. To say the things that really matter. To appreciate the moments while I am in them and to tell the ones I love just how loved they are.
Which brings me to the great Dr. Ira Byock of Providence St. Joseph Health‘s palliative care team who is on a mission to demystify the death and dying process and in doing so shed light on how it can actually enrich and add more meaning to the relationships we share with the people we hold so dear. Keep reading for our Q&A below: Reframing our Conversation and Perspective on Death and Dying
Reframing our Conversation and Perspective on Death and Dying
#1 We are all afraid of talking about death-why do you feel we need to face it head on and demystify the process?
Dying is a gritty, difficult, and vulnerable human experience. But it isn’t simply to be suffered. Talking about dying offers us opportunities to reconnect with loved ones. Maybe these assumptions about dying are not all true: that it's the worst thing possible, that it's always associated with suffering. Maybe it's more interesting than that. Perhaps we can see dying is a developmental phase, like toddler-hood or adolescence, a phase in life that offers opportunity for growth.
With skillful care and reasonable comfort, a person’s dying can hold opportunities to complete a life, rather than merely have it end. If we can be present with the dying experience of another, we are sharing a sacred experience.
#2 As Someone who has had two parents pass away both at the age of 68 -I have had no choice but to have death and dying be a part of the conversation and fabric of my life with my children -but for those who have not had a death touch them what are your tips advice for at the very least making it a not so taboo subject?
It’s never too early to talk about our values, preferences and priorities when it comes to the type of care we’d like through the end of life. One way to initiate the conversation is filling out an advance directive, which is a legal document authorizing someone you know and trust to speak for you in the event you’re unable.
The advance directive toolkits we developed at the Institute for Human Caring, for instance, help walk you through the process of clarifying circumstances in which you would want — or not want — treatments, such as CPR, mechanical ventilation, kidney dialysis or medical nutrition. The Conversation Project and Everplans websites also provide valuable resources and forms at no cost.
#3 What is palliative care and why do you feel we should all have a plan in place to implement this kind of care? Will it help those of us who have a loved one in the final stages of dying feel more at peace?
Palliative care is about living as well as possible with a serious illness. Too often palliative care is equated with hospice and associated with dying. Not true.
Palliative care teams – which include doctors, nurses, chaplains and social workers – attend to the symptoms of a patient’s medical condition – cancer, heart failure, or progressive liver or lung or neurological diseases – as well as the other parts of ourselves that make us human; our emotional, psychological and spiritual dimensions of life.
Patients who receive palliative care along with treatments for their medical diagnoses reliably feel better – and may well live longer – than people who avoid palliative care.
#4 for people who are just at the beginning of their end of life stage-what is your advice, books to help them through the process?
Dying and well-being can coexist. For all the sadness that dying entails, our human potential for love, gratitude and joy persists. There can be a deepening moment-to-moment sense of life and connection to the people who matter most during care and our journey through the end of life.
The most misunderstood thing about life-limiting conditions is that many people say they feel “well” despite their bodily discomforts and the knowledge that their days are numbered. That seems paradoxical, but it’s simply part of our human potential. Because we are more than our bodies and still have the capacity to love and be loved and experience joy.
Recommended reading includes my books, “Dying Well,” and “The Four Things That Matter Most,” as well as Paul Kalanithi’s “When Breath Becomes Air,” and Angelo Volandes’ “The Conversation.”
#5 And for those of us who suddenly lose a loved one – (and did not have a death plan in place) why are these conversations even more important?
While such a scenario is a painful teaching moment, it’s unfortunately way too common.
We would hate for our families and loved ones to feel guilty in being unable to meet our basic needs as we are facing the end of our lives.
That is why it’s important to have multiple conversations about serious illness and your goals of care through the end of life. It’s also why it’s important to have an advance directive on file. If tragedy strikes your family, you want to at least keep it in the family.
Your advance directive gives your health care representative clear authority to speak for you if — or is it when? —you’re unable to speak for yourself. You don’t want an ethics committee or judge to have to get involved in making decisions about your treatments and care.
In your advance directive, you can give your family a sense of what you think your preferences for specific treatments would be, such as CPR, mechanical ventilation, and medically administered nutrition.
These instructions don’t tie the hands of your loved ones — they need to make the best decisions they can based on the particularities of your future medical condition — but hopefully help lighten some of the burden that such decisions always represent.
#6 Do you have any anecdotes or feel good stories about ways that palliative care has helped a family deal with their dying loved one with grace and humor?
When the hospice team met Steve Morris, he was dying hard. Struggling for every breath, he was unable to walk without gasping for air, yet unable to sit still because of the anxiety that defined his life. Steve was scared of dying; he suffered through every waking moment.
By vocation Steve had been a lineman for the phone company before a heart attack and emphysema forced his retirement. By avocation, he was a real Montana cowboy, living for his horses, winning numerous riding competitions and the affections of many for his willingness to teach horsemanship to any child eager to learn.
In appearance and in his life-long smoking habit, Steve was also the prototypical Marlboro Man. He was a man’s man, not one to express emotions, or even admit to having them. Often, work and his horses had come before relationships and family.
Now he was at the end of his rope. Specialists had exhausted every hope, including the lung transplant he had desperately sought. Steve was the one dying, but he was not the only victim.
His wife Dot was his constant companion, nurse, handmaiden, and co-sufferer. If she was out of sight for more than a minute, he would ring his bell or shout in his panicked, muffled voice, “Dot. Dot!”
It took our hospice team two weeks to gain Steve’s confidence through a combination of pharmacy, counseling, and pragmatism. We used meticulous medication management, relaxation tapes, suggestions regarding placement of his recliner, and volunteers to spell Dot so she could shop for groceries, see her own doctor and get a few moments of rest. These efforts, drawing on the experience and resources of palliative care, helped diminish—at least slightly—Steve’s breathlessness and paralyzing fear.
As we learned more of Steve’s personal history, we realized that his anxiety stemmed in part from the fractured nature of several key relationships and from his complex, conflicted family life. One Thursday, while I was visiting Steve and Dot at home, I taught him about the Four Things. Years ago, a nurse taught me that before any significant relationship was complete, people had to say: “Forgive me.” “I forgive you” —because if this were a significant relationship there will always be some history of hurt. “Thank you.” And “I love you.”
“Those are really good, doc.” Steve responded with unexpected enthusiasm. “Write those down for me, will ya?”
At my next scheduled home visit, Steve was sitting up, awaiting my arrival. He and Dot excitedly related the events of the past weekend. On Sunday their children and grandchildren had come over for dinner. At the table, Steve had announced he had some things he needed to say.
He began, “You know, the doctors tell me that this emphysema is finally going to get me. And I know I haven’t always been the best father, or husband, but I love you all and there are some things I want to say.”
With his eyes on my handwritten list, he recited the Four Things in his own words. His delivery was gruff and stilted. But the effect was remarkable. Although his anxiety did not disappear, in the wake of his remarks, its grip weakened. A tenderness and obvious affection was now evident in the family’s interactions that had not been present for years, if ever. Steve’s life didn’t become easy, but it became less anguished.
Ironically, as he faced life’s end, Steve said he was happier with himself than he could ever remember being. Paradoxically, in the process of dying, he was healing and becoming well within himself.
#7 What are the financial costs of palliative care and why is it worth the investment (especially for survivors of the dying and deceased?)
While not all palliative care programs are created equal, evidence continues to mount that palliative care – particularly when initiated earlier – can improve patient outcomes and reduce costs.
According to a study of cancer patients presented this fall at the Palliative Care in Oncology Symposium in San Diego, timing of palliative care was very important with respect to cost.
When a palliative care consultation took place within seven days of death, healthcare costs declined by $975, but when the palliative care consultation occurred more than four weeks before death, costs decreased by $5362.
Medical expenses are the No. 1 cause of personal bankruptcy in the United States, according the Harvard University.
Another study (Banarto, McClellan, Kagy and Garber, 2004), showed that 30% of all Medicare expenditures are attributed to the 5% of beneficiaries who die each year, with 1/3 of that cost occurring in the last month of life.
All this means is that a lot of the money is spent on intensive medical therapies at the end of life that is not helping outcomes, and is making patients endure more bad experiences, including dying badly in ways patients may not have wanted – hooked to machines in a hospital setting, rather than at home surrounded by loved ones.
The bottom line: earlier palliative intervention can improve outcomes and quality of life, and lower costs.
#8 A quotes of yours that I would love for you to elaborate on
“Please forgive me. I forgive you. Thank you. I love you.” – The 4 things that should not go unsaid”
Ask a man who is being wheeled into transplant surgery or a woman facing chemotherapy for the third time what's on his or her mind and the answer will always involve the people they love. Always.
The specter of death reveals our relationships to be our most precious possessions. I've lost count of the number of times I've met people in my office, an emergency room, or a hospice program who have expressed deep regret over things they wish they had said before a grandparent, parent, sibling, or friend died. They can't change what was, but without fail their regrets have fueled a healthy resolve to say what needs to be said before it's too late — to clear away hurt feelings, to connect in profound ways with the people who mean the most to them.
Everyone knows that all relationships, even the most loving, have occasional rough spots. We assume that the people we love know that we love them, even if we've had our disagreements and tense moments. Yet when someone we love dies suddenly, we often have gnawing doubts.
We are all sons or daughters, whether we are six years of age or ninety-six. Even the most loving parent-child relationship can feel forever incomplete if your mother or father dies without having explicitly expressed affection for you or without having acknowledged past tensions. I've learned from my patients and their families about the painful regret that comes from not speaking these most basic feelings. Again and again, I've witnessed the value of stating the obvious. When you love someone, it is never too soon to say, “I love you,” or premature to say, “Thank you,” “I forgive you,” or “Will you please forgive me?” When there is nothing of profound importance left unsaid, relationships tend to take on an aspect of celebration, as they should.
A deep, natural drive to connect with others lies at the heart of what it means to be human. When it comes to Reframing our Conversation and Perspective on Death and Dying there are Four Things that can help you discover opportunities to enliven all your important relationships — with your children, parents, relatives, and close friends. You need not wait until you or someone you love is seriously ill. By taking the time and by caring enough to express forgiveness, gratitude, and affection, you can renew and revitalize your most precious connections.
Reframing our Conversation and Perspective on Death and Dying
The Practice of Good-bye
It's been said that life is a sexually transmitted condition with a terminal prognosis. Having worked for years in close proximity to death, I have come to understand viscerally that we live every moment on the brink. We are, each one of us, at every moment, a heartbeat away from death. Seen against the backdrop of our certain mortality, our differences are dwarfed by our commonality — and the importance we hold for one another.
The stories in The Four Things That Matter Most are drawn from the experiences of people who have stood at death's door, and from their loved ones who learned to use the Four Things in their own daily lives. These stories inspire us to open to the potential for emotional wholeness at any moment in our lives — even in our most troubled relationships.
When I work with people who are approaching the end of life, I emphasize the value of saying the Four Things and I also encourage them to say good-bye. The Four Things offer essential wisdom for completing a lifelong relationship before a final parting. Thankfully, not all good-byes are final — but good-byes can be meaningful. It's important to say good-bye in a way that affirms our relationship and acknowledges our connection to one another.
The word good-bye derives from “God be with you,” a blessing that was traditionally given at parting and, in some churches, still is. The protection and God's help of presence and guidance can be requested whether two people expect to be separated a few hours or forever. In leaving nothing unsaid, we can recapture this original meaning, so that, in saying good-bye, we are actually blessing one another in our daily interactions as well as when we face major life challenges or crises. It only takes a moment to shift the way you say good-bye from a reflex to a conscious practice. Your good-bye and your blessing can become treasured gifts to other people as you part.
Expanding the Realm of the Possible
Our world is bounded by our imagination. This may sound philosophical, but I mean it in a most practical, tangible sense. Helen Keller once wrote, “Worse than being blind would be to be able to see but not have any vision.” When a formerly cherished relationship is marred by unkindness, bitterness, or betrayal, we often assume that healing is beyond our grasp, but this assumption can create a self-fulfilling prophecy. Do you really want to have such a limitation on your vision for your life?
The extraordinary experiences of the people whose stories I tell in this book demonstrate that healing and wholeness are always possible. Even after years of alienation, of harsh criticism, rejection, or frustration, you can establish — or re-establish — authentic understanding and appreciation of others with the help of the Four Things. Even as people confront death (their own or others'), they can reach out to express love, gratitude, and forgiveness. When they do, they consistently find that they, and everyone involved, are transformed — for the rest of their lives, whether those lives last for decades or just days. Stories and experiences of people who have courageously used the Four Things enlarge our vision and imagination, expanding the realm of the possible for us all.
The Four Things are powerful tools for reconciling the rifts that divide us and restoring the closeness we innately desire. When bad feelings occur in our close relationships, we tend to put off the work required to make things right. We always assume we'll have another chance…later. That's understandable, but it's a mistake. Feeling resentful toward the people we love, or once loved, feeling distant from them, erodes our own happiness.
A brush with death often instills in us a newfound appreciation for the gift of life. Simple pleasures — a cup of tea, sunshine on one's face, the voices of our children — feel like miracles. When we've had a close call that shakes us up, the anger we've felt toward people closest to us no longer seems significant. Ill will dissolves in love, appreciation, and affection, and we recognize the urgency of mending, tending, and celebrating our relationships.
Because accidents and sudden illness do happen, it is never too soon to express forgiveness, to say thank you and I love you to the people who have been an integral or intimate part of our lives, and to say good-bye as a blessing. These simple words hold essential wisdom for transforming that which matters most in our lives — our relationships with the people we love.
For more information Reframing our Conversation and Perspective on Death and Dying and on the prolific Dr. Ira Byock and the Palliative Care Team check out Providence Health Services.
Reframing our Conversation and Perspective on Death and Dying is so important.