I read a painfully honest account today of implicit bias, something we all have in common as human beings. A doctor shares openly about how she reacts to a family of a patient who is imminently dying, and the disservice she performs secondary to implicit bias. She explains implicit bias as something we do cognitively, on a subconscious level, associating stereotypes and judgments in ways that affect our attitudes and behaviors.
Last week I accompanied another nurse and we sat in the hospital with a 92 year old man who was explaining to us his willingness to go home with hospice, alongside his conveyed goal to live as long as he can and have good days. These two things are not contradictory. Yet the discussion seemed to evolve into a task of signing papers and having his wife make the decisions, after all he was very sick and perhaps he has minimal time left on this earth, so really addressing and understanding his expressed goal of living as long as possible seemed moot. Another lovely elderly man approaching 90 was hospitalized and underwent several procedures prior to going home. I, like others, have this immediate reaction— usually an unexposed opinion about overdoing things when the tired old body is beginning the rapid trajectory towards quitting all together.
I know I am not the only one who considers reaching the age of 90 a very long life; even arriving to one’s eighties as a fait accompli seems momentous. I have this inner dialogue about just accepting the fact that everyone dies, and perhaps an elderly person should reach this point of acquiescing to death without so much fanfare. So, my implicit bias must be recognized, scrutinized, and held in check when I am listening to a person’s life goals. How do they want their days to end, and what do they see in store? I want to be more aware of “my stuff”, simply lay out the options, be honest, and then really listen to how they answer the question. Fact: Life is precious. Fact: We will deal with the end of life in our own way.
Fact: We can’t avoid implicit bias. Our perceptions, our socializations, our expectations of a scenario and the people in it are unique to each of us, developing over our lifetimes, created by the many situations we have encountered. I heard myself say recently, “That’s just the way I am”…and realize what a cop-out that is! Sorry, Amy, no one is compelled to behave a certain way without a choice. Though it is easy to succumb to our preconceived ideas, and “do what we have always done”…we might pause to take some extra moments, listen a little deeper, and be present for those we claim to be providing our time and attention to. We might learn to see and be another way.
Like other families, my first real glimpse of home hospice care was when the team came to help my mom care for my dad the last 3 months of his life. I was not new to watching the dying process, though. At the time, I was a fledgling nurse working in critical care, seeing first hand the fierce effort to prevent the occurrence of death. Dad’s terminal diagnosis of two separate cancers, both colon and lung, had initially been treated with a brief run of chemotherapy, then the lung cancer was complicated by brain metastasis, which was treated with a number of radiation treatments that took the stuffing right out of him… until dad said “I’m done”. I spent a couple days each week to help care for dad, often overlapping with the hospice crew who would come and go, giving mom a much needed break. Though I knew death as the enemy in the hospital world, I had also been given opportunities to watch many families deliver a loving presence even if they were not the ones to do the turning, bathing and administration of medications. I had witnessed their presence, versus the many drugs we trialled, as the only antidote for an anxious and confused patient. I learned to value this presence—perhaps more than all the technology and medical treatment we could offer in the hospital—this gift of a loving family that soothed a suffering soul. The medicalisation of dying, so prevalent in intensive care, was not the only way for dying to occur. Hospice was delivering care to dying patients in a different way.
Over a decade following dad’s death, now as a hospice nurse, I was travelling that 1-5 corridor again, this time to help care for my mother. I’ve sat in many hospice team meetings, during times when the staff shudders and soft groans are audible, while discussing the patient who had “family issues”—surrounding the son or daughter who was a “medical professional” and being “difficult for staff to manage”. Now that issue was ME!
I probably drove mom’s hospice nurse crazy (though she never told me so). I didn’t hesitate to ask for things, and I wanted to know what else could be done for symptoms that were problematic. We all have our own perceptions and biases, which create assumptions that can interfere with new ways of doing things— but I think both mom’s nurse and myself learned together from a number of opportunities, and ultimately mom benefited.
I still hear hospice staff say, “she should just be the daughter, and let us be the caregivers” and I cringe, remembering well what I felt as both a daughter and a nurse who had end of life expertise, caring for my mother. One word sums it up: Advocacy. I knew how to do this for mom. Being a medical professional does not mean you are an expert in everything medical, and being a family member does not mean you have little to offer in terms of medical opinion. Regardless of what is understood, or lacking in experience—whether clever and knowledgeable, or barely confident and a mere novice…a family member is an advocate. The word Advocacy means to “summon, call to one’s aid…the act of supporting someone to make their voice heard”. This is what families can do for their loved ones.
It is what hospice care is all about.
Only yesterday did I read the story of the woman who is given credit for creating Mother’s Day. It’s a rather sad story, this woman who was never a mother herself, but loved her own mother and recognized that mothers should be honored. According to the chronicle told, she spent her life and her livelihood trying to protect the fact that it was she who actually was the founder and not others who tried to claim it. When I read this, I was dismayed that history seems to remember this glaring need for her to ensure she received the credit. It may or may not be what is actually true, she isn’t here to tell the tale herself. Evidence says she had strong feelings about the holiday not being celebrated, like so many holidays, by the outward show of expensive gifts—another holiday to commercialize— but wanted it to be a true awareness of what mothers do for us, and the world. She commemorated mothers as having been the world’s peace makers.
I have marvelled many times over the years about all the brave mothers I have known. Those whose later years were marred by losing a daughter or a son, and being left with only memories of the love that filled their heart as they had watched their child grow into adulthood. And the other mothers who held their babies and young children, providing the loving hands that cared so beautifully as these young ones died too soon. I always remember my own mother, on this manufactured day, she who was not perfect—no mother is— but loved so perfectly. I think of all the ways she mothered me over the years, both near and afar, my inner awareness of her love and prayers going with me wherever life’s path took me.
I had the joy of sharing my mother’s love for 50 years. I thought this morning about another woman; some would say she actually didn’t get to be a mother. I knew her some years ago. She had birthed a child that was lifeless, but oh how she had loved this infant. She knew before his birth that he would not survive long, but planned for the hours or perhaps days, or miraculously more than that, whatever she was given, and how she would hold him and comfort him. It was not to be, this wish of hers, and a week before his actual due date his little heart stopped beating. I remember well the breathless swaddled bundle, held with tenderness by both of his parents, and the wee urn that his ashes were later placed in.
It doesn’t seem to matter, the length of time that a mother’s heart is spent with a child. Mothers don’t stop loving, because their child is gone. On this mother’s day, like Anne Jarvis, I know from experience what every mother has given and received— The True Gift— a mother’s love.
I was reading an article about the ethical dilemmas surrounding persons in a minimally conscious state, which is not the same as a “persistent vegetative state”. Minimally conscious state is sometimes a grey area in medicine, and recovery may or may not be a realistic outcome. I had the experience caring for patients in this limbo state in numerous instances while I was still a critical care nurse. It sometimes felt as though we’d all been transported to a movie set’s surreal scene: a pale, mostly silent patient connected to miles of plastic tubing and their beleaguered families with their exhausted and bewildered faces looming above the hospital beds, looking down on their loved one for some shred of hope amid the pumps and machines whirring in the room.
It was during one of these scenarios that I took care of an elderly woman, Jane, who had collapsed in the 24 hours prior to the intensive care admission. Her heart for many years had been slowly pumping less and less effectively and had finally reached its end point. She had been revived by the medics that arrived at her home after her daughter had called 911, and I had been her nurse for the three days since then, while she briefly regained consciousness to discover herself on a ventilator. She wrote notes to her loving spouse that she was really tired, and clearly indicated life was too cumbersome to continue. “It’s time”, and she would shake her head when he would talk about her getting better and coming home. Her eyes pleaded with her family, while they gently held her hands and told her how much she was loved. Long before a push for public awareness and many people having signed their name on a POLST form indicating whether they wanted resuscitation or not, Jane was clearly writing her wishes on note pads, in simple words: “No more”.
Her third day came and she did not easily waken. The family sat with her throughout the morning, believing she knew they were there at her side. They had initiated the difficult conversation with her doctor the day before, when he made his rounds, clearly advocating for Jane, stating she had “never wanted to be kept alive on machines” and though they had hoped for a different outcome, they knew she was done. The recommendation had been to “see how things looked in another couple of days”. This day they were adamant.
It’s one of the hardest conversations for families—the removal of life support. Yet this family had listened well over the years while Jane’s physical abilities had progressively slowed, and the last thing any of them desired was prolonging this final phase. She had wanted to “just die in my chair some day”. Though things had not happened the way she had hoped, her family were the ones now that had insisted on the discussion, and honored her wishes.
The order was written, the medications were adjusted, and the endotracheal tube was pulled, the machine pushed out of the way, into the corner of the room. Jane didn’t die immediately; her family sat sadly at her side and quietly recounted favorite stories, softly sang songs, or just touched her hand. Though she didn’t answer, she seemed to be listening. It was one of the first families I had ever observed who clearly spoke on behalf of their loved one; who had adamantly insisted on the patient’s wishes being followed; and who firmly advocated for a peaceful and natural death, even in the midst of all our intensive care technology and the “always something more” that could be offered.
Jane died quietly later that night. Her family’s gift to me: insight into some of the other ways to support and love your family member, by allowing a natural death. She didn’t die at home on hospice, but they provided the next best scenario, a vigil at her bedside filled with loving memories and sweet sounds.
I think we have made considerable progress since my early nursing career. More families are talking ahead of time about their hopes for how they want life to end, what they consider quality of life, and how they can support each other as illness and disease progress. These may be difficult conversations to begin, but so worthwhile: How do you picture the end of your life, what’s most important to you? (see The conversation project at http://theconversationproject.org)
People do get tired of fill-in-the-blank: national day, week, month. These are often prompts for us, though, historical events and acts of altruism and courage, to remind us and teach us— now and in the future. Another one: March is Women’s History Month, with a focus on women in the labor force, and I simply must remark on this. One hundred years ago, on April 6, 1917 the US joined the world at war, with 413 nurses in active duty in the Army Nurse Corps (for contrast, there were 21,480 nurses by armistice day on November 11, 1918), with more than 10,000 of those nurses serving overseas. My grandmother, Lieutenant Edith Amy Hollindale was one of them (photo here from my book, “Solace: Story of a War Nurse” [download for free above]).
My grandmother always said, “the opportunity was there”, as she performed acts of heroism during her year of Army Nurse Corps service. Following her year on the battlefront in evacuation hospitals, she spent the remainder of her life caring for her disabled husband and many foster care girls rather than practicing a career in nursing like others of her cohort. But perhaps another role of heroism was living daily with the drudgery of caregiving and dependency of vulnerable people demanding her constant dedication. As we ponder the labor force of women, and the valuable example of so many amazing nurses over this past century, I add my voice to others and commend all the caregivers, both trained nurses and untrained family members, who sacrifice so much to provide quality days to those who are often forgotten in society…the disabled, the unwanted, the homely, the needy, and the dying. Though grandma received the purple heart for meritorious services during her time in France, she did not receive recognition for her years of service after the war. I am reminded of all the women who are serving their families today, as unpaid caregivers, who have not received compensation for their gift of self-sacrifice. My grandmother has my greatest respect and gratitude for the unheralded care she provided to grandfather and the many women who entered and stayed in her loving home over the years. She provided a beautiful example for the women in the generations to come.
Today, I’d like to recognise all the unpaid women caregivers in the labor force. My hope is that there will be a time in the future when these women might be recognised and recompensed for caring for the ill and dying in their homes, where few see the daily surrender and valor.
“Did you ever know that you’re my hero? And everything I would like to be. I can fly higher than an eagle, For you are the wind beneath my wings.”
To all the women, who have both in history and are today performing laborious acts of love, THANK YOU.
When I open my eyes, I see the river flowing out to the sea, as it continues to do, day after day, regardless of what else the day brings with the sunrise. It brings a sense of permanence that steadies us in a world full of change and surprise. Some things seem to stay the same. Yet the river, as it meanders past me, has changed even in these few years I have known it. Creeping farther up the bank each year, it sweeps more of the trees and the silt with each winter rainstorm and ensuing floods. Some mornings the glassy calm is a soothing balm while other days the white caps remind me of the larger pounding waves the river hurries past me to join. The original inhabitants of the river speak of the changes: it no longer teems with fish and its shores are no longer held secure with giant Sitka spruce reaching across the watery expanse. The river has its losses, too.
“To everything there is a season, and a time, and a purpose” the wise man said.
Recently I learned that a sister still carried guilt with her, many months after the death of her brother, because he died ALONE. She really hadn’t been shocked, because he had lived alone for so many years. But she carried guilt in her backpack, along with some sadness and a small packet of relief. She had wished that someone had been there because now she would always wonder…Had he been peaceful? Did he suffer? Had he been okay with his aloneness? And coincidentally she was glad he was “now at peace”. The one consolation she had was much of his living had been in solitude, which had been his preference for so many years, and she clung to the hope that he had died the way he wanted to.
Those things that seem so steady and abiding are changing, as we all are changing— sometimes in such subtle incremental ways that few around us notice; other times it may be obvious, that things are eroding and disappearing and soon there may be only the memory of what was. We will have to leave what we know—some day; leave all of it behind; even those dear ones who may or may not be with us when it is time to go.
“Be like a river that flows
Silent in the middle of the night
Not fearing the dark of the night,
Reflecting any star that is in the sky.
And if the sky fills with clouds,
Clouds are water, like the river, so
Reflect them too with no regret In the silent depth.”
“Humankind has not woven the web of life. We are but one thread within it. Whatever we do to the web, we do to ourselves. All things are bound together. All things connect.” Chief Seattle
An eventful beginning to a new year has transpired; amid the striving and struggling in power circles, and the famous and not-so-famous voices heard on TV and the internet during contentious times. Words stuck a chord with me as women raised their voices against tyranny, “We are linked…We are not ranked” (Gloria Steinem, Women’s March on Washington 1/21/2017). Indeed, we are all connected. Something that has disconnected us historically is the belief that some are higher up, some have more power that can be wielded against the weaker. I am realising more and more that this applies in all facets of life. We are responsible to each other. We are one not better than the next…we are interrelated whether we want to be, or not.
For those of us who are working in areas of medicine, a reminder that the crisp white coat or official badge worn or advanced degrees obtained does not separate us from the feeble…those ill with disease while racing towards the finish of this life, yet inextricably linked as fellow humans. They are the real teachers of palliative care. We are linked.
In these days of uncertainty, I am studying knowledge, something sought after for centuries, even during historical periods of darkness and ignorance. According to Plato, knowledge is defined as “justified true belief”…what problems this creates for anyone reading history! Because the masses believe something to be true, does it mean it is? The Oxford dictionary’s word of the year for 2016 is “post-truth”, defined as an adjective “relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief”.
We are linked. We are connected. We must all be truth seekers, each responsible for our own way while not hindering others to also find their path along the way.
Tradition says that a new year brings with it new hope and new goals. Some of us even write these down, placing a slip of paper carefully in a carved wooden box to bring out next year, the talisman of this year’s opportunities. Time brings with it new chances to begin again…while there is breath, there is hope.
A young woman is hopeful that this coming year NED (no evidence of disease) will be her companion again; her busy life has no room for sitting in chemo chairs and she wants to learn how to ski. An older man has the desire to complete a hike up Mount Hood with his grandson while his legs can still be commanded. A woman in her middle years has only begun, and she has so much to write in her memoirs to ensure her family will remember the stories when she is gone. Another man, living alone (without the help I know he will need soon), tells me he can’t be filled with worry about what’s to come, he only has today which he is still able to enjoy.
The common thread for them all, as each day brings a new sun (—Oh, harbinger of light and hope—)—is the weight of losses from yesterday. They could choose to pack this around and keep all of yesterday’s destruction the focus of today, bringing along the paralyzing reality that soon all will be lost. Instead these tangible losses become the things that are laid to rest, not to be dwelt on today… for there is much to consider and attempt before tomorrow…starting with thankfulness for the new day.
“Be not the first by whom the new are tried, Nor yet the last to lay the old aside.” – Alexander Pope
May your new year be a release from the past, filled with new hopes for the future, with reasons to rejoice in each new day.
While visiting with my English host, who teaches religious studies at an all-girls school in the UK, we bemoaned the truth together as we had both experienced it: that sharing one’s knowledge and actually teaching another person is not the same thing, but a difficult task indeed.
I toured the next day through the dungeons of an 800 year old castle, which caused me to consider all the years of persecution and judgement handed down to both the deserving and undeserving. And how knowledge wielded power.
Wandering through the prison-castle made me think of the inquisition, and the years that religion used a “dead language” spoken to their lay people; a language few could understand. Knowledge is understood to hold power for the ones with the knowledge, and can be exercised in punitive and paternalistic methods; or it can be valued for the enlightenment that knowledge brings and shared in an altruistic manner, with the realisation that knowledge should never be owned by a few.
You, my reader, must wonder by now what strange rambling road I have journeyed down! These days as I study amidst brilliant minds and return to academic pursuits, I am more than ever certain that we who have understanding and knowledge regarding the events that take place as the human body succumbs to disease and death have an incredible burden and responsibility to share this knowledge with others. In the ever-more complex and technologically advanced medical world, people need full understanding to make difficult decisions.
This means not speaking an unused language, but speaking truthfully and simply so that the things that happen “behind closed doors” are uncovered. That is to say: the “codes” performed to resuscitate already dead bodies; the treatments used to sustain life just a little longer; the burden of care and symptoms resulting from these treatments; the obvious spiral into decline and death from disease; the things that to the experienced eye herald the nearing of imminent death—medical personnel have in-depth knowledge about these aspects of end of life care and first-hand experience.
For all of us providing care in a complex health system: Let’s stop speaking Latin, instead let’s shine light and understanding and really empower people to make their own decisions. (This will require some changes in how medical information is shared, it will take extra time, and requires patience and practice.) Let’s put the power of decision making back in the hands of the person whom everyone is talking about. Let’s share knowledge so that understanding grows and enables true choice, by each and every person, for their own life…
“If you have knowledge,
let others light their candles in it.”
November is national hospice month…an opportunity to honor all the patients, families and cohorts throughout the years.
Over the years, I have been truly privileged to work with amazing families, of all kinds, as they walked through the loss of a loved one. (I do not minimize any of them when I give one group extra recognition, as I want to honor all of the carers for the dying.)
Not too long ago a work-cohort described her father’s last four months of life: a grueling process of life-sustaining surgery followed by wound infection and additional surgery, leaving a sense of failure when the palliative care team finally met with her family in the hospital, following her father’s final diagnosis of a massive stroke. Everyone seemed to realize that the vital man, in his late 80’s, who had agreed to the life-saving surgery months prior, no longer had the chance of quality days. He had made his desires known, clarifying for his doctors and family members that his life had been a good one, he was now looking forward to joining his wife who had died not too many years before.
My cohort expressed some guilt over the discussions she had been part of with her father, as she relayed how persuasive had been her arguments when that first surgery was questionable, and now she spent time second-guessing whether her encouragement had in fact caused him so much unnecessary suffering. This, what he was now going through, was not what anyone had wanted, yet the hope for full recovery had been real, finally destroyed by this latest disastrous outcome. They had taken her father to his home one last time over the holidays, and now he was dying in a facility.
I asked her if it wasn’t possible to allow her father to remain in his home the last few weeks, knowing that he had only a little time left.
Her answer, “We’re not that kind of family”, struck me dumb.
However, this was not the first very capable, educated, medically-savvy family with resources that I had seen not consider caring for their loved one at home. (My own family had required some coercion to take care of my mother at home, even with a plethora of abilities and family members). But still, I was a little saddened that even in the midst of hospice work, a nurse’s family felt so ill prepared to care for their loved one and grant him this gift: to die in his own home.
Last year I wrote a blog in GeriPal about caring for loved ones at home, both the young and old, and I got into a lot of trouble with folks who made it very clear: not everyone can be provided care at home. In fact, all the women who are mostly the caregivers, who are not paid for this work, many of them in the workforce, having to juggle their own families and work schedule, now have the added burden of ensuring mom’s care in the nursing home is meeting her needs— that is why we have options like nursing facilities, so don’t make women feel guilty for trying to do everything, but unable to do it all themselves!
I get it. None of this part of life is easy, in fact it will be some of the hardest times we go through, losing parents and spouses and other loved ones. But the great majority of people do want to die in their own home. This is not a criticism of families that do not care for their dying loved ones in their own homes, it is simply an observation of the families who do.
So, what depicts “that kind of family”? The ones who find a way to do the day to day care as their loved one moves closer to death? Here are just a few of the descriptions of care-giving families I have known: the daughter who took FMLA to care for her mother the last two months of her life and moved into mom’s home; the sister and mother who came from other states the last three weeks of a young woman’s life when her friends could no longer provide the necessary around-the-clock care (that family lying on either side of her as she quietly died in her own bed); the father who had help from the older son to manage the farm, so he could be available both day and night the last 6 weeks to physically care for his younger son who returned home from the unsuccessful transplant with the knowledge he was dying; the neighbors who moved the lonely widower into their family room in order to keep her from dying in a facility, as “she would hate that”; the 4 adult children who shared their mother’s care the 6 weeks following a devastating wound infection, who told me “now it’s our turn, she cared for us”; the son who carried his tiny mother into the shower and gently bathed her, never having had children of his own but somehow knowing how to give tender care that last month of her life; the nurse-daughter who paid for a daytime home caregiver while she was at work and for the final 3 1/2 years had been the other carer for her mother (following the stroke that left her mother immobilized); the retired spouse who spent every moment caring for his wife as the brain tumor took the last vestiges of her sensibilities away (her final 5 months of care so demanding yet the very thing he said he would never do differently); the mother who moved into her daughter’s home the last year and a half of her treatment merry-go-round, providing care to the entire family; the two daughters who shared the care of their widowed father in his last three months (splitting the week in half between them); and the two sons who did the same for their mother so she could die in her own home.
I can honestly say I don’t know what makes these families “that kind”. I do know I have seen self sacrifice and generosity of spirit and countless moments of unconditional love given as gifts to those who are dying. One might ask the question what constitutes a “family” …there have been other beautiful “family moments” that I have witnessed in institutional settings. The ancient couple, while she lay dying in the skilled nursing facility, whose nurses moved a bed into her room so her spouse of 65 years could lie next to her; the disabled woman who had spent nearly all her adult years in a nursing home, whose staff shared the bedside vigil at her death, ensuring she did not die alone; the tender care of the aides over the years, who had fed and clothed and bathed the resident they called “grandmama” (she had been the original person a decade earlier to be moved into their new facility)—all the lovely staff-carers who in fact became the family to many of these nursing home patients. There are beautiful people everywhere who provide loving care.
But those families who feel inept and ill-prepared, whose loved one asks to remain in the home, and decide they are “that kind of family”… I wish it was something that could be easily taught or even purchased. It seems there are families who collectively make this decision to be that kind.
This month, recognizing hospice and end of life care, I think back with great gratitude and give tremendous honor to the many families who were the kind, weathering some tremendous difficulties to give the gift of a home death…whose great love gave the rest of us something to ponder and perhaps strive to be.