diaryTradition 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.

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knowledgeWhile 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.”

Margaret Fuller

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Artist: Kyall McGee

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.

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eyedropperIt’s been nearly 30 years since the evening as a fairly new nurse I had been assigned to the oncology floor. I still remember my patient (a young woman in her mid thirties with advanced ovarian cancer) the mother of the two young boys who sat with her husband as they forlornly waited at her bedside, squeezing her pale hands while she lay gasping with heavy breaths, and no longer cognizant of the rest of us. The little boys kissed their mother goodbye and went home with their grandmother. This young mother had been hospitalized a few days prior to my shift while suffering a pain crisis, requiring significant medication adjustment to alleviate her suffering; it was obvious to the medical staff that she was coming to the end of her life. Now her family was understanding this as well and attending vigil at her bedside.
I have never forgotten the look on the oncology doctor’s face when he gave me the order for a morphine injection, STAT; it was a look of great sadness mixed with concerned yet intense and determined resignation. And I have never forgotten the sinking feeling I had, as I watched her chest slowly stop the agonized rise and fall with each breath, her respirations slowed to a minimum, taking her last final gasp shortly after I gave the intravenous injection. The husband seemed to take a gasp at the same time, and quietly sobbed while I checked for a pulse. Terror and guilt struck my heart with conviction that I had done the deed, giving her that last injection. Both the pharmacology and the physiology of the facts in this instance argued she was very close to death, that the morphine was not a fatal dose, but simply happened to be the final dose. But I have carried that sense of dread with me through the years, at the bedside of others.

Yes, that same sense, during my mother’s final hours, as I alternated morphine in her subcutaneous site with other medications, and the family members remarking on the amount of medicine she had required at the end. Was I responsible for that, too, I wondered? Afterwards I did a lot of soul-searching and questioning of how well I had handled mom’s symptoms at the end of life (and I was a hospice nurse!). While my mother-in-law lay dying in the hospital and we tried valiantly but vainly to attain an earlier fight to arrive at her bedside in time, I phoned the hospital and had a conversation with the night nurse about her struggle to breathe. I was the one who asked Sandy, the nurse, to give her the doses of Dilaudid that the doctor had ordered as a “PRN”. That feeling of deja vu, when my brother-in-law remarked “that narcotic they gave mom—that killed her you know”. There have been many times I have been the one to give those last drops of morphine or other medication, as those of us around the bedside of a dying person all watched the physical closing of a life.

We hospice nurses, who understand that those final hours of life often hold this pitfall, have explained to families in many ways, it is not the last dose of medicine that “killed” your loved one, it was the disease that gained the final foothold, and life came to a close, as it would have with or without the medicine that was given. Someone will always be the one to give that final dose.

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PlanI meet my patient, and think to myself, death by a thousand cuts.  Incremental loss of mobility, independence, then slowly parts and pieces of his body, appendages removed, organs no longer functioning and blood vessels filled with sludge.  I am not the one to judge what he considers quality of life, but I am appalled at his medical chart.  It reads more like a medical dictionary than a story of someone’s health deterioration: so many terms, so many diseases, so many medications.  In the midst of his disintegrating health, and very recent hospitalizations, there has not been one thought to complete an advanced directive or a POLST form; I know this because he tells me so.  Without a choice about his code status, he remains full resuscitation should one of his poorly functioning body systems stop working. So while we are talking about his sadness and the losses in only 50 years of life, I ask the question, “Have you thought about how you want things to happen, as your health continues to worsen?”  No, he actually hadn’t thought about the end of his life, even in the midst of several years of such tenuous health with chronic disease, in and out of the hospital.  And no one had thought to mention, though he’d only lived 50 years, with his steadily advancing multi organ failure he may not have one more.  So we had the conversation.

My patient may continue to die ever so slowly, but thoughtful consideration of what comes next might avoid continued chipping away at any quality of life he has left, and he might have a chance to die on his own terms.  And hopefully, he gets to decide for himself how much and just what he would want done.

Some proponents of palliative care want less focus on these conversations and more focus on palliating symptoms, and providing a quality of life focus…“living not dying”.   While we’re at it, let’s call it “supportive care”, instead of “palliative care” to disassociate with hospice and dying.   I had a palliative care physician tell me that the chaplains are used to explaining advanced directives “to lend a softer approach and make the discussion more palatable”.   (After all, we nurses who have seen futile attempts at resuscitation and the catastrophic results of heroic treatments during advanced illness might be biased and somewhat graphic.)

The conversation doesn’t need to wait until a crisis occurs, and a palliative care team meets up with a chronically ill and dying patient or the family in the ICU.  I say this is TOO LATE.   In fact, the conversation should happen long before, while a person is cognitively able to direct their own care.  It isn’t age or disease related, but should be woven into life as a common thread, since we die at all ages and in many circumstances.

It’s simply making a plan. “Simply”, you might say, does not seem possible in our age of medical technology.  This week I planned a vacation, to spend time with distant family later next month.  We plan for births.  We plan for education.  We plan for careers.  We plan for choosing our life partners.  We plan for living arrangements.  We plan our financial decisions.  WHY should we wait to plan what we would like to complete our dying in this life?  Someone will have to decide how much or how little medical intervention attempts to prevent the final act.  But the inevitability is universal.   Let’s hope the determination is made by whose life and death it is, anyway.

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music and deathWhile sitting quietly, I listened while he talked about years that have “flown” by, and the changes that life had wrought, not just in the physical body, but the faded career, the fractured relationships, the plans that were collected in baskets of past thoughts and motives that never came to fruition.  Perhaps it would have been easy to think his life was coming to a close, whether things were completed or not.  After all, he wasn’t “young” anymore.  I even hear it said, quite often, that someone had a “long life” as though that in itself makes it easier to accept the fact that life as we know it here on this earth will end.   But as long as there is breath, and thought, there is the hope that this day is not the finale, and that this day holds meaning for each of us.  He looked certain, confident when he said, “I still have music to play”.

These are the plans we make, and the hopes we hold, suddenly interrupted.  Our plan may be as simple as what we need to pick up at the grocery for dinner.  Our plan may be as complicated as how we hope to die, (at home, in our bed, surrounded by loved ones?).

In reality, they are probably all the myriad of things in between, the mundane and fantastic. I have been privy to countless discussions about the details of the final plan, but I  remember most those whispered fears of my patients, things like: “Will I die the way dad did, raging at everyone?” or “Will I be able to die with dignity and peace, with my family near?” or “When I leave behind my children, will they remember me?” or “Am I dying soon?”  And it makes me aware, as we awaken and plan our days, that like the rich man in the parable, who has plans to go into the city, and purchase more property, and execute the scheme for today, that instead, “this night his soul is required of him”…he didn’t know that he only had today left. A distant family member, just 35 years old with so much intent to continue experiencing life, died in a sudden accident; he is a reminder that today really might be the last day.

I love that our plan may still be to play music, to have another day to relish life, to live intentionally, to accomplish more, yet I am reminded, again, how little control any of us have in the numbering of our days. Remember to  make this day count, delve deeply into the joy of the moment, give a big hug to the person near you, who loves you, and play the music you were intended to play, in this very moment, today… time is not waiting.

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I was reminded again recently, when you don’t know what to say; say nothing.

Screen Shot 2016-06-24 at 7.12.54 PMLet quiet speak.

We sat at a table and listened as a patient tearfully explained how hard things were for her, how her husband wasn’t listening, how she didn’t want things done for her, even though they might be well meaning, ahead of her ability to accept the changes, and desire the help.  We heard of the difficulty she was having, grasping her new stage IV cancer diagnosis, wrapping her head around the fact that the clinical trial failed, all the chemo trials were exhausted, and she visualized her life draining away.

When someone is suffering, it is incredibly difficult to resist throwing out a life line.  But she wasn’t asking for this.  She only needed to express her grief and sadness, to us, who could listen with empathy.  How hard it is, though, to hear someone’s travail without jumping in to rescue.  But sometimes our greatest work is done in silence; just listening to hopes and fears expressed as a person processes coming to terms with dying. Platitudes and advice are not usually welcomed.

It’s a human experience: being alone, shaking our fist and calling out in deep distress, in the dark of the night or on a mountain top.  We are not always expecting or even asking for an answer, just needing to say the words.   Still, all of us tend to squirm in our chairs when a conversation becomes too uncomfortable to hear, and we want to fill the silence, and talk about ANYTHING else.

My trainee and I sat together after our nursing visit, and she said, “I felt like a fish out of water.  Way out of my element.  I didn’t know what to say.”  That’s when I shared what a professor, many years ago, shared with me.  Say less.  Listen more.  Learn to sit comfortably in silence.  Let a person sit quietly, allowing tears to flow, without feeling the need to interject something.

Like the song says, “You say it best, when you say nothing at all”.

It’s really okay to say nothing.

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wishing_star_by_oh_my_jaI met a woman recently who works for the “Make a wish” program, and we shared stories about granting wishes.  She made an emphatic statement, “I’m so glad most of my clients have ‘a life limiting illness’ but aren’t necessarily dying”.  (This accompanied a rather horrified expression when I mentioned my experience: that not all of my patients lived long enough for “Make a Wish” to get the details organized in time.)

Hospice is the “H” word… I’ve seen many faces cringe, and heard many people make the statement, “They had to call hospice”, or “So and so had to go on hospice”, which often makes me think of my “little man” patient who was approaching puberty, but would never reach adulthood. He had a different view of hospice.

Davie actually knew he was a hospice patient, and would sometimes say to me, “Being on hospice means I’m going to die…someday”.  His slow deterioration and shrinking body was never an obstacle for the exuberance he shared about life, or sharing his make-believe adventures, with his interminable ability of looking forward to what might happen next in his day.  I had to get in touch, each week, with my inner child, as we played games and “acted out dying” (in spaceships being blown up; while pirates having to walk the plank; or being buried alive by enemy pirates as we tried to steal their hidden treasures; and sometimes unable to escape the giant dinosaurs eating us before we could get away).  I wonder what his little sisters, now almost grown up, must think about when they remember their brother, and the times that the nurse visited, and their brother played games while they sometimes complained to their mom, “Where is my hospice person?” (wishing that the hospice nurse, or the social worker, were there for them, like the special hospice people were there for their dying brother).  I wonder if they think about those games, their brother’s ceaseless enjoyment, and have some sense of magic that he created, in the midst of experiencing his dying.

Davie was always living while dying.

I am reminded of the commandment to become as little children to enter the kingdom of heaven.  My little Davie taught me this in a new and wonderful way.

Yes, death is there waiting.  BUT oh, to be more like Davie…Simply hold on to the wonder of each day, find the magic in it, and never let go of your ability to make believe; it is what fairy tales and wishes and dreams are made of.

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Kiki (2)Some of my family still mention, when reminiscing about my mother, that she was “out of touch” with reality.  My mom had a mental breakdown in her early thirties, (during the 50’s when a lot of women lived in a strange post WWII utopia); she spent a considerable time recovering and learning how to be in this world.

I like to contemplate presence, and how being present, and aware, is such a gift in this life: to travel the road and not miss the colors, the smells, the infinitesimal details along the way.  It’s what I remember about my mother; she was anything but superficial.  She was acutely aware of someone’s inner person, and better than most trained counselors, could get to the heart of the issues at hand pretty quickly.  At times, this created levels of discomfort for some of the family.  She didn’t always have the acceptable façade of a well mentioned remark, or small talk, and would delve right into your soul.  Some stayed away, because it was hard to hide when you were with her.

As my mother lay dying, there were a number of people from the past who wanted to come and visit.  Where do these people come from? I often wonder: it’s something strange at a time when really only loved ones seem to matter, not past acquaintances or casual friends, but they show up like Job’s friends- when they are least effective.  But I know people sometimes come to the dying person’s bedside for themselves, not really for the person who is laying there.  My spouse was listening to a couple of young women, who were sharing all kinds of inane and personal issues with our dying mother.  After bearing with their visit, when they left, he sat next to mom and said, in several ways, essentially, “You know those people don’t mean you any good”, and she finally firmly reproached him with a statement that he recalls to this day, “I know that, honey”.  She had to say it three different times for him to realize that she was aware, and in fact totally in touch with what was going on.  She knew that they needed this time with her, and was willing to give it.

I often think of my mother’s ability to have a “strength’s perspective” with everyone, finding the good and remarking on it, and being able to “see through” what was on the surface, and know deeply what in fact was going on, “in reality”.  We still joke about her coming into a room, and saying, “What’s going on?” as though she didn’t know, and always wanted to be in the thick of it.  I now know, as I have grown older, that she simply announced her presence, and she unconditionally loved all the egotistic, self-absorbed and less developed family members who misunderstood and judged her continually.

This is what I believe it is to be self-actualized.  You are comfortable in your own skin.  You have recognized how little the past matters now but also how much it has formed you, how great a gift the love you’ve found is, and how quickly this life is gone so you treasure each moment with each person in your life.  You’ve become who you are.  (Just know, you will be harangued and disregarded for reaching this point in life, in fact others will laugh at you, criticize you and consider you simple, and perhaps damaged from your life’s experiences.)

My mother is my life’s hero.  She shared in her later years a wealth of wisdom and an ocean of love.  Now, as I age and experience some of the marginalization and disregard from a younger generation, I realize more than ever, how much my mother’s love transcended all the earthly muck, and buoyed me through my own hard knocks in this life.

I miss you, Momma.

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Variety_is_the_spice_of_lifeSome say: people want to know when they are dying.  Some say: people need to be informed.  Some say: doctors should be better prognosticators.  Some say: denial is a good thing.

We all have our biases.  I have had the awesome privilege of listening and participating in many variations of end of life discussions.  I think most everyone I have known have seemed to have an understanding towards the end of their life that time is running out.

My patients have come in all sizes and colors.  To name a few: there are the “engineers”, who want to know every last detail, usually with a scientific bent.  There are the “emoters”, who need to have a whole lot of sympathetic listening and sometimes enjoy creating a scene for their families.  There are the “Peter Pans” or “Pollyannas”, who only want to hear the upbeat side of things, don’t even mention the “D” word (dying) or the “H” word (hospice), please.  There are the “Do-overs”, who wallow in their regrets to the very end. There are the “warm stoves”, loving on everyone they touch right through the end of their lives.  There are the “prickly pears”, who won’t let anyone near them, suffering in their own scourge of unhappiness. There are the “hermits”. who prefer to find refuge in their thoughts, and often die alone, when everyone steps out of the room.

Some say: you die the way you live.

I made my last visit to Jenny, her own unique self, so pragmatic and determined and also a great denier of the obvious, who had challenged me so often during our time together.  Her symptoms were difficult to manage as she tenaciously hung on to life; now she was less and less responsive and mostly nonverbal.  At this visit I did some nursing tasks to improve her comfort.

Then I whispered, “You know you won’t be here much longer.”

She looked into my eyes and said, “Let’s not talk about it”.

Oh, so Jenny, I thought.  She had asked me, a few weeks before, what it would be like, when she began to “really die”, and how would she manage, and what would I do for her, and would I please tell her when the time came?  I try to answer these questions honestly, knowing that some disease processes follow certain patterns at the end of life, and also knowing just like the child who asks where do the babies come from? that the information can be more than what is expected or wanted.  I also try very hard to answer what underlying fears I hear in the questions.  “Will I be aware; will I suffer; how long will it last?”

Even though she may not have wanted the answer I gave to her question, she quietly held my hand and told me thank you as I left, and she died the next day, without much fanfare, just a few slowed breaths while her family sat vigil.

No one really knows how the end goes, till they get to the other side.  I only wish they could come back to share with the rest of us.  I do know, and have been reminded by my dear patients, that we only pass this way once; and every day matters…so make it count.

“When I get to the time when I leave this body, I will never say that I lived a half-lived life.”  Wayne Dyer



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