hospicediary

THE LAST DOSE

Posted on September 30, 2016 by Amy Getter

eyedropper It’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.

Posted in end of life care, family of the dying, hospice, hospice story | 3 Comments

DEATH, NATURALLY

Posted on August 30, 2016 by Amy Getter

Plan I 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.

Posted in end of life care, the conversation | Tagged death on your terms, end of life conversations | 3 Comments

PLAY YOUR MUSIC

Posted on July 26, 2016 by Amy Getter

While 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.

Posted in end of life care, hospice | Leave a comment

SAY NOTHING

Posted on June 24, 2016 by Amy Getter

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

Let 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.

Posted in cancer | Tagged end of life conversations, listening, loss of independence | 1 Comment

MAKE A WISH

Posted on May 27, 2016 by Amy Getter

I 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.

Posted in end of life care, hospice, Wishes | Tagged living in the moment | Leave a comment

AN ODE TO MY MOTHER

Posted on April 30, 2016 by Amy Getter

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.

Posted in daughter, end of life care, family of the dying, wisdom | Tagged daughter, love, mother | 2 Comments

STATING THE OBVIOUS

Posted on March 28, 2016 by Amy Getter

Some 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

Posted in living, unique | Tagged attitude, live, living in the moment, preparation | 1 Comment

WHAT AN OVERCOMER LOOKS LIKE

Posted on February 16, 2016 by Amy Getter

Ettie never told me that “My mission in life is not merely to survive; but to thrive; and to do so with some passion, some compassion, some humor and some style.” (Maya Angelou). But she had lived this… She thrived.

Now her life was about waiting. She had grown more patient with age.

The piquant aroma wafted down the hallway, rising from the kitchen stove where a pot of soup was being stirred while Ettie and I were quietly talking in her room. I had become accustomed now to the coming and going of neighbors and family members who would peek their heads around the corner to check in, and usually head for the kitchen to taste the always ample supply of something savory. Ettie was surrounded in her little bedroom by pictures that told stories of both dead and living family members and photos taken in her younger years (she was such a fashion statement with a huge grin like a “cat that ate the canary” that showed how vitally she lived her life!) At the bedside table was a bouquet of flowers that her daughter made sure were fresh from the flower garden out front of the old bungalow. She hadn’t eaten much these past few days, and her loving daughter was trying to tempt her with all the best family recipes, while sharing secrets of seafood gumbo with me. Ettie was diminished to an emaciated 87 pounds; her huge dark eyes sunk deep into her wrinkled, smiling face, with a shock of dark corkscrew curls tinged with grey that belied the fact that she was nearly 90 years old.

I had not felt completely comfortable at first, appearing an oddity in a neighborhood where my ethnicity was noticed as I carried my nursing bag into their multi-generational home. But Ettie set me immediately at ease, with her southern drawl and hospitality, making me feel as though I was many miles away on a porch swing sipping sweet tea. I was also welcomed by her daughter who shared the cancer story with hints of anger at the medical system: “Mom’s doctor wasn’t really paying attention to an old woman with aches and pains, not giving her any treatment” until her disease was very advanced and then being told “there was nothing more they could do”. Her daughter was overwhelmed with the coming and going of life; in the midst of the “sandwich generation”, trying to juggle her work with the care of her mother (which was daily becoming more burdensome) and her own daughter who was now hugely pregnant. Everyone was visibly harried, readying for a new baby shortly to enter their household and an ancient matriarch soon to leave this life: frantic preparations, doctor appointments, family coming and going at all hours.

Except Ettie, who seemed the very picture of serene repose. She patiently lay in her bed, and relished the anticipation that exuded from every crevice of their home, and was excited without being nervous about the things awaiting their family. There were frequent jokes about her queenliness, as she ordered the family around and made sure her recipes were followed; the supervision was gladly tolerated. She told me she had “tried a lot of things to stay a little longer”, but was ready now to “go be with Jesus”.

But not quite yet. “I’m gonna have to hold that baby first.”

I heard many stories about her growing up years in Louisiana, the youngest daughter in a sharecropper’s family of 9, and how she got out of the generational poverty when she moved to the northwest, went to college, and became one of the first “Black women to graduate from the university”, along with her older sister. I could visualize her momentous achievement punctuated with that huge smile that lit up her beautiful face.

“Overcomer” is the word that comes to my mind. Overcome the naysayers, who believe you cannot jump out of the mold you were born into; overcome the constraints of poverty and prejudice; overcome the self-doubt, and become a person who can look back on their life and be proud at the obstacles surmounted, the accomplishments attained, and the loving family that surrounds your bed as you are exiting this life.

Ettie had told me her plans to last until she got to hold her first great grandchild in her arms. No surprise, the woman who had overcome so much in the prior decades, she even overcame a body riddled with cancer just a little longer. She did indeed survive just long enough to smile that contagious smile while holding a new little great granddaughter who battled her way into the family, and they took pictures to last past a lifetime with all four generations of overcomers.

Posted in family of the dying, hospice story, telling stories | Tagged attitude, loss of independence, mother, overcome, survival | Leave a comment

TEARS IN HEAVEN

Posted on January 6, 2016 by Amy Getter

I heard many stories later in the evening, while we were sharing remembrances of her, stories of the two of them while they lingered together, of her beloved Henry as he sat smoking his pipe in the far corner of the couch with her curled up next to him. After 60 plus years, they would still be spotted walking hand in hand around town, “like teenagers”. She had nursed him during the last few months of his life as cancer slyly stole him away from her. They said she was inconsolable for a long while after his death, but strangely life moved on, as did she.

Now it was her turn. After her own cancer diagnosis, there was very little treatment that she wished to pursue. She told me more than once that her life had been “fully lived”. A special person came to stay and helped care for her, and many friends visited who would miss her when she was gone, but she was eager to see Henry again and spoke of that as she openly talked about her plans to use her Aid in Dying pills. She looked at me intensely at one visit, stating emphatically, “I am not suicidal; I just want to decide for myself when the time comes”.

A day arrived when she knew that it was time. I had watched her slowly shrink away, becoming more detached; less excited about leaving the house, and taking less nourishment in. And I wondered if she would decide to forgo using the medications to hasten her death, as it appeared she would soon begin the last venture into active dying. But I arrived one day, and she stated clearly: she needed people called, she needed to make arrangements, and it needed to happen NOW. We were caught up in the urgency that she felt, and in fact everyone arrived as had been discussed, in a flurry of support. She took her medication after telling all of them how much she loved them, and would miss them. They told me she was no longer talking within 10 minutes, as they watched her eyes close along with the rise and fall of her chest: the slowed rhythmic breathing until it stopped.

When I arrived to take care of the business that follows a death in the home, I told the family how strange it seemed, to see her sitting there, where I had left her that morning, in the exact same manner, but now with marbled skin and lifeless pose. Then I was told, it was only natural that she should be there, in that very same location on the couch that Henry had always sat, enjoying his pipe. She had taken over the spot shortly after he died. I felt tears sting my eyes, as I recalled all the times I had sat next to her in that favorite corner, where they two had spent so many years together. I realized how she had come full circle, now exactly where she wanted to be, holding hands with Henry again.

“Would you know my name

If I saw you in heaven?

Would it be the same

If I saw you in heaven?

Would you hold my hand

If I saw you in heaven?

Would you help me stand

If I saw you in heaven?…

Beyond the door there’s peace I’m sure

And I know there’ll be no more tears in heaven.”

Eric Clapton

Posted in Aid in dying, end of life care | Tagged acceptance, death on your terms, death with dignity, love | 6 Comments

THE HEART OF HOME

Posted on December 1, 2015 by Amy Getter

A hospice nurse travels into many abodes. So often these homes speak of dreams and accomplishments, or regrets and failures, but they always seem to frame a part of the owner’s story. Like Cathy’s final work of art, her dream home, or Phyllis’s waterside home that she had lived in her entire life, a little dilapidated, (like her), but oozing warmth and love from its walls with remembered stories.

When I heard there was a man in a chair, in a 5^th wheel, who was admitted to hospice, I knew there’d be a “rest of the story”. He and his wife had been married less than a decade, a second time for them both, having lost other spouses years before, with adult children from these prior relationships.

Gary and Belinda had sold their house last year and bought this travel trailer. Their long held plan to go across country and see the sites abruptly ended after the trek was interrupted in just the next state when Gary developed some searing pain. Things happened quickly after that, Belinda told me. Numerous doctor appointments, a lethal diagnosis, and debilitating symptoms after only a few months kept Gary mostly in his recliner.

This is where I met him, in his chair, with his legs hugely swollen and nearly unable to carry him where he wanted to go. There was no space for a hospital bed, though I could see one would be needed in a short time. His one expressed desire: “To die at home”. There was the usual lengthy discussing and paper signing, and when he hugged me as I was leaving, he told me he was so glad I had come (not the customary response by all my patients!) and said he had been afraid- of dying- but felt reassured things would go as they should.

God, I thought, you must make it so.

Families are messy. They are full of discord, disagreement, and sometimes disloyal, other times intact only because of loyalty. But nonetheless, families manage to gather as a person is dying, often setting aside their differences and realizing that love is what matters in the end.

In a very brief time, the plans for a family reunion during the upcoming holiday shifted into planning the day’s care giving needs. Overnight, Gary declined from agonizingly getting out of his chair to the inability to do so, and his wife decided he must remain there; it was the only place he was comfortable. I can only say this was a challenge, to keep him clean and comfortable, and some back-breaking effort on all our parts. But Gary did indeed stay in his chair, and his fractured family gathered around, the thin walls bulging with bodies, pets, and stuff, and the family standing outside and taking turns inside brought him tangible comfort as he slipped into unconsciousness and death. They were a motley crew, but the palpable love and sadness caused my eyes to tear and my heart to swell. They stayed, making noise and more mess, and Belinda told me during some raucous laughter that Gary peacefully breathed his last.

Homes come in all kinds, but I am reminded of the saying, “Home is where the heart is”.