HELPLESS

I’ve had many moments of observing the steady slowing and final stopping of a heart beat.  I’ve had countless times to share a patient’s frightening sense of vulnerability as bodies cheat their owners and life becomes uncertain with death a real possibility.  In fact, it was just over a month ago that we talked, my brother and I, about our bodies’ betrayal, sitting with him as he lay dying.

During my early years of nursing in critical care, medical devices, monitoring equipment and life-sustaining technology surrounded the patient’s bed.  I could read the importance of numbers and waves, the patterns of electrical signals accompanying my knowledge of what the progressive fatigue of a heart’s AV node appears like on the monitor in the room.  And since those earlier years, without the ready assistance of monitors and infinite data available, I have honed the skills of nursing observation and assessment to understand what subtle changes mean in skin color, heart rate, blood pressure, and the emotional state of my patients as they have neared the end of life.

But now it was myself, anxious and vulnerable in my hospital gown with my heart rate dipping into the 20’s  and a recognition of what too many p waves on the monitor in the emergency room meant for me.  It was my spouse, holding my hand with a worried look, attempting to be calm.  It was my physicians, trying to find a bed in the entire state of Oregon that could accept me as a patient and meet the immediate need of pacemaker implantation.  Oregon’s hospitals were diverting due to COVID; hospital beds were at a premium.  In the early hours of waiting in the emergency room, two patients were also having to wait for beds: one having a stroke and one in the midst of having a heart attack. This was a stark reminder of the strange times we live in, many of us vaccinated and working outside hospital settings perhaps less aware of the impact COVID was still placing on staff, patients and families in crisis in our medical centers.  

Hours later, when the bed became available,  it was me in the back of the ambulance this time, not as a nurse accompanying a patient to a Portland hospital, but being that person who needed emergency transport to a center 3 hours away that could accept another patient.

I’ve had empathy for all my patients over the years, and so many conversations about loss and powerlessness—yet a bystander.  That sense of helplessness, loss of control, being dependent, hit me hardest after being treated and released and coming home.  A pre-planned move was happening the week following my procedure.  To have so many dear ones help with the move was both humbling and frustrating—I was the restricted “invalid” who could do little to help.  

Now, recovering from my “scare”, and having time to think about many of the feelings I encountered these past weeks, the word helpless is prominent in my experience.  I knew I was helpless (defenseless) to make my body respond the way it should; I saw how my spouse felt helpless (paralyzed) to fix my situation; I recognized the emergency room physician felt helpless (powerless) to make a hospital bed materialize; I felt the helpless (tapped out) yet enduring hands that cared for me from the moment I entered the doors of the ER, throughout the week ahead.  Those whom I knew well, and those whom I had not met before, became my lifeline to move from a vulnerable, helpless state, to a sense of renewed purpose.  The medical marvel of my pacemaker, the competence of the medical team, and loved ones cheering me on have all done their job—I am resolved to not stop.

Life isn’t done with me yet.

Posted in end of life care | Leave a comment

Roy-boy

Seventeen years ago today, myself, my youngest sister, only brother, and our spouses buried my mother.  Two days ago, I revisited the moments of my mother’s death as my brother lay dying.  His intensive care hospital stay the week before was seven years later after he survived a cardiac arrest.  Naturally, since he could “come back from the dead” once with such alacrity, we all suspected he could do it again.  And indeed, he surprised his intensive care team by recovering and was released from the hospital in a weakened state but ready to do his part to rehab.  

Then the second day home he began to bleed.  I believe his refusal to go into the hospital was a foreboding-if he went back, he might not ever come home.  

As I walked into his bedroom, the smell of blood thick in the air, he said to me, “This is where I belong.  This is where I need to be”, and I told him that we would make it so.  His home health nurse, who had advised going to the ER, was there.

Concerns about his blood pressure and more bleeding were less frightening to me than the coolness of his hands and feet, the edema in his legs, and the faint mottling beginning on the soles of his feet.  My fleeting thought, “I don’t know if you will pull another miracle off this time, brother”.

Not unlike the experience with my mom, when my directive became “get her home on hospice”, for my brother is was “keep him home and get hospice NOW”.  We struggled for the next several hours with a less than optimum response from his primary care doctor, while having the local hospice team on stand-by waiting to do an urgent admission when they received the order.  

The nurse and social worker arrived in mid afternoon, with gentle words of support and reminded me of all the times I had been in their shoes—recognizing the immediacy of getting meds and equipment into the home before it was too late.

The bed arrived in the evening, with 3 burley fireman carrying my brother in a blanket from his bedroom to the living room, where he could perch between two couches with wife and sister on either side.  The meds arrived later in the evening.  He had not complained of pain, but cramping and aching had been his companions for the past couple days.  After his first trial dose of pain medicine, “get me another hit of that, sis”, was a comic relief moment.

The care of his body was constant that night, he tolerated our ministrations without complaint.  The work of his mind was concerned with making sure we were safe, was the house locked, would you make sure to get extra garbage service?—as the piles of wipes and chucks became mountains.  He needed his phone.  Where was the controller? All these were his roles, taking care of things for his wife while he lay dying.  I became lulled by his clear headedness, asking for bites of yogurt, knowing me and saying my name, that perhaps he would linger for days.  He was strong willed, and had been so able-bodied.  Now my worry would be terminal restlessness, and how would we manage that for days?  

As though he knew, as though he had prepared so well for the moment, he simply asked for a little more of that medicine to help him relax.  His breathing became rapid.  With wife and two sisters at the bedside, aware of the change, we called his son to come.  Little sister recited his favorite childhood poem, “Now I lay me down to sleep, I pray the Lord my soul to keep.  If I should die before I wake, I pray the Lord my soul to take”, and his wife spoke words of love to him.  Within minutes he was gone.

I felt the finality as we sisters washed and cared for the shell of our brother.  I felt the finality of the family members who chose not to be part of his life.  I felt the finality of an only brother, gone from my life.  I also knew the gift he gave, the gentle passing he shared with us, the concerns he had for us at the very end.  He was right,  he died where he belonged, with loving family at his side.

It’s a common hospice tale.  

Peace and love brother, I will meet you soon enough.

Thank you to Cascade Hospice for making these precious moments possible for us.

Posted in dying at home, hospice story | 4 Comments

THE WORST PATIENT/DIFFICULT FAMILY?

Nurses, not infrequently, have been labeled (very often by other nurses) as “the worst patients; the difficult family member”.  Here’s a couple reasons why: nurses invariably assume the role of caregiver in both their careers AND their lives.  They historically will care for everyone else, before themselves (often contributing to the phenomenas of “compassion fatigue” and “burnout”.)  Nurses put off their own health care needs, and when they do have a medical appointment can’t help critiquing everyone who comes in and out of their exam room.  (At least I know I do!). Then there is the assumed family role, whether sought after or not, as the designated “spokesperson”—the patient advocate.

From my early years of nursing, I can recall numerous occasions when the other nurses in the unit would report, “the patient’s daughter is difficult; she’s a nurse”.  I am sure I was reported as such when my mother was dying, as I expressed numerous opinions about her symptom management.  I found myself truly between  “a rock and a hard place”.  I had knowledge about who my mother was, what her symptoms could mean for her, the family, the hospice team, but also knew I was a family member first.  Oh the tightrope I balanced! I became her voice when she no longer had one, yet was reminded to remain within boundaries others felt I should recognize as “being just the daughter” and not the nurse!

This bias is a reoccurring hospice theme.  I read an article recently in AJN, this same dichotomy expressed by another nurse-daughter.  Then again, as I spoke with other hospice staff just last week about a nurse-daughter’s concern for her father’s increasingly distressing symptoms toward his final days, staff referring to her as “overly involved and highly emotional”.  The hospice team’s bias too often surfaces with an expectation that this family member will be a problem.  In the article I read, the nurse-daughter was conveniently used as a nurse, when a new situation arose, and the hospice nurse (who should always make the visit when a significant change occurs in a patient’s condition) instead assumed the nurse in the family would handle things.  Or the dichotomous view, “she should let us (the “experts”) handle things, and just be the daughter”.

So, the next time you—the nurse/daughter or nurse/relative—are in the position of caregiver/advocate/family member, remember that someone (your loved one) is relying on you to help them speak a language that you understand in the midst of what seems a foreign land. It’s OKAY to be the nurse and the family representative.  AND remember that you can also choose to be the family member, albeit at times a very knowledgeable one, that expects the hospice team to do three things:  listen first, come when requested, and leave their biases at the door.

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PANDEMICS MERELY HIGHLIGHT NURSING HOME PREDICAMENT

A wise saying: There is nothing new under the sun.  Suffering is our human condition; we all have some experience Scream Parody (1)with it.  Though it seems of late there is just too much.  A recent visit to a nursing home reminded me of how much silent suffering exists in our world, especially among our most weak and vulnerable inhabitants.  An elderly gentleman was labeled by staff as “resistant to care” for flailing his arms and pushing away caregivers in his final days of life.  He lay in his bed, having lost the ability to talk in order to express his needs, or turn himself in bed to relieve the pressure on his bony prominences, or quench his thirst with small sips of fluids.  Sadly, this is not an isolated situation in places where our vulnerable reside. 

We still do not provide the kind of care most of us would like to have as we become increasingly dependent and eventually lay dying.  COVID-19 has seemingly targeted the elderly, with nearly 40% of COVID-19 deaths being nursing home related.  This current crisis has created extra burden in caregiving (and also innovative ways for delivery).  The “essential” workers in these settings are true heroes dedicated to diminishing suffering while often working within a vast lack of resources.   I have witnessed firsthand how difficult it is to properly staff these facilities.  Though plenty of data is being collected, we actually don’t know how many people are dying without the level of care that was needed, without loved ones at their bedside, without facility staff who were adequately trained to alleviate pain and suffering.

Our elderly are again being short-changed and marginalized in a society that has a poor track record for providing the financial and societal supports that are necessary to ensure dignity and appropriate care towards the end of life.  So when I read about another funded study—this one for 3.5 million dollars— to implement a palliative care program in a number of select nursing homes, I do wonder what it is that we still need to study? (A large number of previously performed research studies have indicated the benefits of palliative care, and the training inadequacies among those who care for elderly and seriously ill populations.) I should make the distinction here, regarding palliative care and not hospice care per se, because we are talking about care that lessons difficult symptoms and increases quality of life, not just end-of-life care.   I’m happy for the palliative care focus, but perhaps Maslow’s hierarchy of needs warrants closer examination and provision of funding sources to ensure that needed care gets delivered?  I believe in research, and in the societal change that comes from deeply understanding the issues and ensuring solutions are reality-based.  We must begin by having adequate staff for meeting the basic needs of keeping residents clean and comfortable, having time to feed them, moisten their dry mouths, and ensure staff have adequate training to know, recognize and alleviate symptoms of distress.

I am indeed validated in my concerns, when I read another study (McGarry, Grabowski, & Barnett), indicating more than 20% of US nursing homes across the country have reported severe staffing and PPE shortages during this pandemic, (the most common staff shortages were reported among nurses and nurses’ aides).   How do we provide this palliative care, when our nursing homes are plagued with staffing issues, with ongoing lack of trained staff who can provide it?  A report from over a decade ago from the recognized leaders of palliative care in the US (CAPC-Center to Advance Palliative Care), recognized the need for, but also the limitations of, palliative care in nursing homes:  “The tight financial constraints of nursing home management provide challenges for delivering palliative care. Many homes know what they need to do to improve the quality of life and care for their residents, but don’t have the necessary resources for service enhancement.”  Additionally, this report outlines a number of models that are being used, and can be replicated, to ensure palliative care is provided to nursing home residents by partnering with outside agencies to deliver palliative care, and training of nursing home staff in the basics of palliative care delivery.  Well over a decade later, there still has not been a standard federal response to the acknowledged needs of palliative care training and care delivery in nursing facilities.  Now we see the devastation of COVID-19 amid our elderly.  In August the CARES Act will finally distribute funding for nursing homes for improved access to PPE, infection control and testing, however much of the funds are connected to “performance-based distribution” to ensure federal government pays for “better outcomes” (I can’t begin to know how an equitable funding allotment will be assured).

So, we know it is needed, we know how to deliver it…WHAT’S THE HOLD-UP?  How much is related to financial constraints that drive staffing metrics, along with profit margins (70% of nursing homes are for-profit institutions)? And limitations including  the education and training opportunities for facility staff, with high rates of turnover for minimum wage jobs in these facilities?  As a country, we have not deemed providing palliative care to every resident who needs it in a nursing home as a federal spending priority.   I know (as so many of us do) the lack of practical caregiving resources available, even when COVID deaths occurring in nursing facilities didn’t highlight this lack or create an even greater need.

I just wonder…When will our country begin to spend the money necessary to provide the needed resources to right this wrong?

“Excellence is not a gift, but a skill that takes practice.  We do not act ‘rightly’ because we are ‘excellent’, in fact we achieve ‘excellence’ by acting ‘rightly’”.  Plato

UPLIFT trial National Institutes of Health’s National Institute on Aging, grant R01AG066922.

McGarry, B.E., Grabowski, D.C., & Barnett, M.L. (2020). Severe staffing and personal protective equipment shortages faced by nursing homes during the COVID-19 pandemic.  Health Affairs, 39 (10),1-5

Nursing Home Data- retrieved from: https://data.cms.gov/stories/s/COVID-19-Nursing-Home-Data/bkwz-xpvg/

Center to Advance Palliative Care. (2007). Improving palliative care in nursing homes. New York: Meier, D.E. & Sieger, C.E.

CARES Act Funding- retrieved from: https://www.hhs.gov/about/news/2020/08/07/hhs-announces-allocations-of-cares-act-provider-relief-fund-for-nursing-homes.html

Posted in end of life care | 1 Comment

“HE WHO CANNOT, TEACHES”

As I thought about who and what have been my greatest teachers in life, I considered the quote: He who can, does; He who cannot, teaches*.  Though this quote is considered disparaging to teachers, I like to think of it this way:  as we age, and perhaps no longer have the ability todo” some of the things we used to do, those experiences of doing lend a depth to what we are able to hand down to the next generation, a kind of legacy.  You might argue that this is not at all what is meant by the quote.  I choose to be contrary.

Another year goes by and I am one of many aging workers who have experienced and can share some wisdom about listening.  As I accompanied a novice palliative care worker on a visit, I realized the lessons I have learned about listening came through living in many moments, and I can share this.   Though I may no longer “do” (I am not daily caring for dying patients), I can teach because I have been a doer. (These are lessons I hope the next generation of doers learn also.)  For me,  my mentors and teachers have been those who have had a depth of knowledge through their own personal growth, and like them, I believe what I know firsthand lends credence to what I teach.  

The lesson today was:  listen with your whole heart.  I  had three teachers of this lesson who could be considered gurus.  My counseling professor, who taught me that being curious was one of the best attributes of any counselor—and lived this advice.  My mother, who taught me that giving time to listen to each other was part of loving well, providing a means of preventing squabbles and misunderstanding—always stopping to give her full attention to any concern expressed.  My first dying patient, and countless others who followed, who taught me that the many things unsaid had great importance and could be heard— if hearts are open and listening well.

As I accompanied this new worker, I thought about being curious— which means don’t settle for a simple answer; giving full attention— which means stop focusing on filling in the blanks on the computer screen; and listening deeply to hear the unsaid words— which means take time to really hear.   I realized that the listening lessons must be taught by those who know: those who have shared quiet moments and not hastened to fill the speech gaps during hard conversations;  those who know that a question is simply an open door, and the opportunity to hear much more than the quick answer comes only if time is allowed before the next question is hurriedly asked;  those who hear a concern, and can also hear the deeper unspoken words of existential suffering and aren’t afraid to delve a little deeper; those who can listen to another’s story even when their own story might feel mutual, yet recognize this time is not about them, or sharing what they know, but about stopping the flow of words in their own head, and being emptied of lists, agendas and necessary questions.  

So, though I may do less, I want to teach this:  Stop doing, and begin listening with empty hands, open hearts and caring presence. 

(*from collection of quotes by George Bernard Shaw in Maxims for Revolutionists)

Posted in end of life care | 1 Comment

WHAT WE LEAVE BEHIND

Don’t call me morbid because I’ve spent the past few days preparing obituary examples.  I’ll be using these for a class of young people to demonstrate a bit of what “legacy” means: something left behind when you are gone.  This is how I happened upon the opportunity to read about “Pink”.  I did not know Mary A. “Pink” Mullaney, and she’s been dead since 2013, but I cried a little reading her obituary and only wished I had met her. (I have been lucky enough, though,  to know a couple of people as unique as “Pink”).

This is an excerpt from what her family wrote about her:  “We were blessed to learn many valuable lessons from Pink during her 85 years, among them: Never throw away old pantyhose. Use the old ones to tie gutters, child-proof cabinets, tie toilet flappers, or hang Christmas ornaments. Also: If a possum takes up residence in your shed, grab a barbecue brush to coax him out. If he doesn’t leave, brush him for twenty minutes and let him stay. Let a dog (or two or three) share your bed. Say the rosary while you walk them. Go to church with a chicken sandwich in your purse. Cry at the consecration, every time. Give the chicken sandwich to your homeless friend after mass. Go to a nursing home and kiss everyone. When you learn someone’s name, share their patron saint’s story, and their feast day, so they can celebrate. Invite new friends to Thanksgiving dinner. If they are from another country and you have trouble understanding them, learn to ‘listen with an accent.’ Never say mean things about anybody; they are ‘poor souls to pray for.’ Put picky-eating children in the box at the bottom of the laundry chute, tell them they are hungry lions in a cage, and feed them veggies through the slats. Correspond with the imprisoned and have lunch with the cognitively challenged. Do the Jumble every morning. Keep the car keys under the front seat so they don’t get lost. Make the car dance by lightly tapping the brakes to the beat of songs on the radio. Offer rides to people carrying a big load or caught in the rain or summer heat. Believe the hitchhiker you pick up who says he is a landscaper and his name is ‘Peat Moss.’  Help anyone struggling to get their kids into a car or shopping cart or across a parking lot. Give to every charity that asks. Choose to believe the best about what they do with your money, no matter what your children say they discovered online. Allow the homeless to keep warm in your car while you are at Mass. Take magazines you’ve already read to your doctors’ office for others to enjoy. Do not tear off the mailing label, ‘Because if someone wants to contact me, that would be nice.’ ”  

In a world full of madness and meanness, this is what looking at the world through “rose colored glasses”, remaining an optimist, and practicing random acts of kindness looks like. Legacies come in all shapes and sizes, rather material or something intangible—but the impact is a little piece of immortality.  

Posted in end of life care, legacy | Tagged , | 1 Comment

WHO ADVOCATES?

How many of us, as nurses, have had the experience of speaking to an “enflamed” family member, and practiced all our communication skills to bring calm and rational judgment into play?   Recently, in the midst of a friend’s pain crisis and a families’ sense of being overwhelmed and powerless in a hospital’s decision to discharge without effective treatment rendered, I had the opportunity to use some of these skills—with the hospital staff.  be-511555_1920

I had a “run-in” with a nurse manager at a regional hospital.  Though this was only a phone conversation, this person’s irritation, even anger, with me was a palpable sense through the radio waves.  She had been given an order.  She had already applied her decisive approach to the patient and family and spoke as though there were no options available.  She was orchestrating the discharge.  She really did not want to talk to me.

It makes me wonder:  Are we listening, when family express great concern about symptoms that medical staff seem to downplay?  (Remember, who decides what “pain” is…us or the patient?)

Are we listening, when the stoic patient is making statements like “I just want to die” with pain totally out of control, and the treatment furnished is not effective?

Here is the dilemma: It is a weekend, the specialist is not available until the following week, and the hospital has limited beds.  Here is the answer: Send him home, and perhaps hurry up the appointment with the specialist?   Not acceptable.

One statement is never the right answer:  There is nothing more that can be done.  There is ALWAYS something that can be done.  For one, ADVOCATE.  Every nurse needs to have this role.  We are the “eyes and ears”, we are the ones the family is depending on, to listen and see what is happening, using our refined clinical expertise and judgement, to defend the patient from a system that does not always see the individual, does not necessarily care if the home situation is adequate, if the symptoms are controlled, or if the cause of symptoms has been deduced.  This is not a coding problem, or a patient-bed management solution, or an insurance issue…this is first and foremost, really seeing the patient. I can’t help but wonder, with all our technology and streamlined productivity and effectiveness, are we missing the most important aspect of providing medical care…LISTENING WELL?

In the business of the day, in the overworked staff’s experience, and in the power that rests in the hands of the decision makers, we must first and foremost advocate for the patient and family, and truly demonstrate what most medical establishments’ mission statements claim: The patient/family unit is at the CENTER of all the care received from the entire medical team.

Posted in advocacy; patient rights; hospice nurse, palliative care | 5 Comments

NEVER GIVE UP

I am concerned about a new mantra afoot: that palliative care–unlike hospice care– is not “giving up” but irivers addressing improved symptom management and quality of life (QOL) for all patients with advanced disease.  I  am disappointed as I read opinions of many champions of early palliative care in the perpetuation of this myth— both outspoken views, or by sheer inference— that palliative care is increasing QOL while hospice care is requiring “giving up” (also synonymous with the very end of life).  Making such a distinct difference between palliative care and hospice IS NOT helping the average person understand either palliative or hospice care.

As physicians consider the benefits of early concomitant therapy, recognizing the value of a palliative care referral at the time of a patient’s serious disease diagnosis, they have also hopefully acquired an understanding of hospice philosophy demonstrated over the last 40 plus years in the US. Hospice is not about “giving up”.  Anyone who has provided hospice care can describe numerous conversations with patients at the time they signed up to use hospice services, clarifying that deciding on hospice did not require “giving up”—hospice services would contribute to needed support and encouragement to live fully, all their remaining days, weeks and months, with quality of life as a focus.  Because someone no longer seeks curative treatment does not equal “giving up”.  And because someone does not want to continue with multiple medical interventions, regardless of the benefits versus risks, they too have not “given up”.  And because someone’s physician makes the deplorable statement, “There’s nothing left to do” does not mean one should “give up”.   Treatment choices should be determined by the person whose life is being lived with a serious, even terminal illness (since as I have mentioned in the past, being human is indeed a terminal diagnosis, we all might consider our decisions and complete that advance directive!).  

Please, palliative care advocates, do not refocus the public on palliative care versus hospice care, as though these two entities are the anthesis of one another, with the caveat that palliative care is not about “giving up”.  We will be going back decades if this is how the medical community now sells palliative care services.  The entirety of palliative care services is a continuum, a means of recognizing serious illness and demonstrating the right care at the right time, according to a person’s self determination.  Honest and multiple conversations are needed.  Palliative care providers can actually help people in a sometimes long journey of debility and illness: to have symptoms better managed; futile care perhaps less frequently sought; adjustments made easier to the ongoing losses incurred with serious illness; and care focused on the quality of every day that is lived. 

We are often the light bearers in a culture that denies death will happen to all of us.  Medical professionals who are having honest conversations regarding palliative care earlier on in the continuum of life threatening disease —whether this leads to the determination to use hospice services or not—must include fair sharing of all treatment options, thereby assisting in decision processes without their personal bias.  Please, please don’t compare hospice to “giving up” and for “the very end of life”, thereby relegating it to only those who believe they are soon dying and palliative care another direction to take altogether.

Posted in end of life care, palliative care | Tagged | 1 Comment

WHO WILL PROVIDE THE CARE?

I finally read something, in the NY Times, about The Zen Hospice Guest Home* in San Francisco, which closed down last summer.  Though The Zen Home was known to many workers in end-of-life care, others may not consider this significant news. It seemed incredibly sad to those of us who understand the immeasurable value of a home-like setting in the non-profit sector for dying persons unable to remain in their homes, with excellent care provided by staff experienced in end-of-life care.  The Zen Home closure represented just another demise of a wonderful option for the dying.  Financial difficulties were cited in funding the day to day care for residents at the guest home.  This is becoming a common scenario in other communities across the country.  Options for non-institutional end-of-life caregiving in places other than home are often dependent on philanthropic donations.  Increasing funding dilemmas for smaller and more intimate hospice settings have become common, while these settings are also being affected by a more fettered and complicated Medicare hospice regulatory and reimbursement system.  

For many of us, if asked where we hope to die, “in my own home” is the answer.  But the reality is, many of us will not have this option.  Some research predicts nursing homes will indeed be the place of death for nearly half of us by 2030, even though not preferred by most of us. Deaths in assisted living facilities are often considered and reported as “community deaths”, (versus more “institutional” places of death), though some of us would argue that these facilities’ end-of-life care provision is not synonymous with hands-on care received in a person’s home by family members.

Sadly, many of the aggregate living settings, whether considered institutional or not,  are too often places plagued by staffing shortages, a revolving door of new and minimally trained workers, and profits paid to stockholders and owners, rather than shared with the minimum-wage-paid-workers who are actually doing the care-giving.

Regardless of the claims that progress is being made in hospice and palliative care accessibility and improving end-of-life care, I believe we will face an ever-increasing crisis in this country as our growing numbers of frail elderly impact both the place and the persons who will provide care for the dying.  We ship people out of hospital beds as they are dying, often to avoid penalization and receive adequate reimbursement from the Medicare system, and we have overwhelmed facility staff who simply cannot provide the hourly care needed when one lies dying. (At best, an average of 4 out of 24 hours represent the total patient care hours in most nursing home staffing ratios and will never meet all the care needs of the dying). 

What I will need, when my dying becomes a reality, is someone who will be the gentle hands and give the loving care in the middle of the night, when in a confused state I try to get out of bed; and someone who will clean my mouth, all dry and crusted from the “mouth breathing” common in the dying; and someone willing to turn me side to side and change my soaked sheets, from the recurring episodes of incontinence.  Who will provide regular drops of medication in my mouth, when I can no longer tell someone that my pain is worsening, and I have lost the ability to both talk and swallow?  A physical presence is needed, and it may not be my loving family member, but an underpaid caregiver in an institution that is severely understaffed and whose staff is overwhelmed.  How do we intend to find and train and retain the workers in the future who will actually do the physical care needed for the dying?

Dying well needs more than an educational focus for the upcoming generations of medical providers and academicians.  Trained caregivers must be available in order to provide excellent hands-on end-of-life care in these institutional settings where many of the dying will reside.  Currently, across the US, nearly all the day to day care in our institutions is provided by aides who are mostly high school graduates making slightly above minimum wage, many who worked as baristas last week and an aide the next. This has not changed in the last 40 years, since I began my own nursing career as a nurses’ aide. Chronic staffing shortages and high turnover rates plague the institutional settings that provide care to the aging population with advancing disease, many of whom will die in these institutions. We need a new plan and allotted funding, freed from the greed of increasing profit margins and corporate agendas, to improve these conditions in the future.  

We may be dying in places not of our choosing with care provided by too few hands at the time of our greatest need.   We will need more than education and research to change how we die.  We will need adequate staffing ratios in facilities, with accountability. We will need vastly improved monetary compensation, increased recognition, and genuine support for those who actually do the physical day to day care of the dying (those same minimally educated employees, also minimally compensated, who are doing the bulk of the care in facilities across the US).  We will need social change that demands a shift from profit-motivated health care to prioritizing the day-to-day delivery of excellent end-of-life care for all.  

Posted in aging, caregiving, dying at home | 1 Comment

A FAREWELL IN 2018

As 2018 comes to a close, I am remembering a friend who died this year.  Over a period of many months, we had these wonderful talks that seemed a lot like Tuesdays with Morrie,* with moments of her insight shared during our conversations over coffee breaks and lunches.  Being a medical professional herself provided it’s own special challenge, along with the sense that this was happening way too soon.

Her peaceful exit followed a couple of years of really “living” and making the days count, in spite of cancer.  Below are some highlights of her learned wisdom.

On having a “Bucket List”:

“I don’t have a lot left to do, not that I didn’t want another twenty or thirty years, but I don’t have a ‘bucket list’, or a lot of things I need to get done. I’ve had a great life.” 

On having the hard conversations:

“I’ve had all those dinners and hard conversations with my family, even though they rolled their eyes and didn’t want to, they now are pretty ok with talking about this…”

“When I asked her (my doctor) to be real with me, and give me all the information without holding back, you know, ‘none of the bullshit, I want to know everything’— She did just that, she talked in-depth, in medical jargon (knowing I understood this) and about every possibility and treatment option, until my eyes glazed over.  I didn’t mean all that information! Talk about doctors not listening to the real message!”

On options, self-advocating and DWD:

“Speaking of options, She (the doctor) said I could retire— like that is an option! 

With regards to chemotherapy treatment: “She (my doctor) thought I might get two years, but what would that take, to buy two years?  I think I have a few months.”

(I ask, ‘What makes you think you only have a few months?’)

“Well, I don’t want to financially, emotionally and physically bankrupt my family.  It’s why I’m glad I live in a state like Oregon, where I have some say about that. I’m glad to have options.” 

We talk a little more about DWD in the state of Oregon, though she is not totally certain this is what she will do.  (She is just happy to have a choice, she tells me.  And ultimately she decides not to go that route.)

On continuing treatment:

“I was kind of convinced (by my doctor) that this new treatment might give me a couple of years, instead of only a couple of months.  So I did a handful of treatments, and I was so sick, and the tumors grew, and I said I didn’t want to do anymore chemo even though she was a little upset with me.  I know this is something everyone does differently.  For me, I get as much benefit from the other approaches I’ve taken.”  

(In addition to living many months past the predicted time, even without continuing treatment, she has used things like massage, meditation, acupuncture and imagery and successfully reduced the need for significant amounts of pain medication in the midst of a very aggressive cancer with metastasis.)

“I’ve taught them (the hospice team) some things about palliative care, and I am directing my own care, even though I know I’m not in control…” and she punctuates this statement with a deep, gusty laugh.

On grief and guilt:

“I’ll tell you a story.  When my daughter died, I carried grief around with me for 20 years.  It was a burden that I could not put down, only a monster would lay down that grief!  I knew it was my burden to carry.  I didn’t want to be a monster… 

Then, when I was on vacation in the islands, I went to a healer for a facial and massage, and she told me I could have a ‘reading’ for free.  I don’t know if you’re into that kind of stuff, and I am not sure if its real or not, I just know what happened.  She told me in the middle of things that I didn’t have to keep burdening myself with my grief, that it was ok to lay it down.  I realized how much a part of my body that grief had become, how guilty I would feel without it, and what a monster I would be to let it go.  And then it dawned on me how ridiculous that was, that I didn’t have to continue to carry it with me, that in fact my daughter if she were here would be so upset with me that I had carried it for the past 20 years.  I learned from that very day to begin living without that heavy guilt of grief, and I have continued to experience this sense of freedom every day since.”

On writing her legacy:

“I know that we don’t always share the dark things, the parts of us that we aren’t proud of, our mistakes, the things that in fact form us to be who we are as humans.  I need to tell the story of my dark places, my mistakes that are a big part of me.”

On lessons learned:

“It’s hard to say what has been the greatest lesson.  I realized I was not in control of anything.  I am not in charge.  And I learned to let go…I will have to let go of everything.  But even though I say I’ve learned the lesson, you know how that goes…everyday this is a lesson I must repeat! (She chuckles, and smiles knowingly.)

On living:

“So much to do, so many projects to get done, and I worry I won’t get it all done.  But then I realize I will get done what I am supposed to.”

My last visit, as we sat quietly on a not-so-good day, she told me she had finally finished her projects, completed the family gifts of mementos to remind them all of her… later on.  She looked a little forlorn as she whispered “I don’t know why I’m still here.  I was supposed to die a long time ago”.  But some of us know how blessed we were to have her stay, even a little while longer.

(*Tuesdays With Morrie, by Mitch Albom)

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