THE BIG BUSINESS OF DYING

Posted on April 17, 2023 by Amy Getter

As the saying goes, there are two things we can’t avoid: death and taxes. Another less-known and also difficult-to-avoid situation is the cost of dying. While attending a recent webinar on end-of-life care, I listened to the phrase “the death care industry” and was struck anew by the normalizing of our capitalistic practices as dying has been financially incentivized over the years. For me, just knowing that hospice-care organizations are publicly traded on the stock market is rather appalling.

Not wanting to voice an unpopular opinion, I was going to ignore this whole death-business profiting and avoid mentioning the newcomers, like doulas becoming a part of the death industry, natural burials and for-profit hospices. But no, I said to myself, not everyone knows that dying — no matter how you do it — is costing more and more. Perhaps this needs to change?

My past experience

My participation in the business of end-of-life care only spans a couple of decades, while my personal experience with dying has encompassed the past 40 years. From one generation to the next, I have seen the not-so-subtle changes. When I was a young child, my grandparents died in the hospital setting and the nursing home, encased in white gowns and surrounded by disinfected linoleum. My parents died at home; loved ones surrounded the bedside along with local hospice support. My oldest sibling directed his care wishes: leaving the hospital, not returning to the hospital and remaining in his own home to die. My nursing career has spanned not quite four decades beginning in intensive care, where we professionals desperately kept death at bay, through the years of hospice and palliative care, where the team included caring, loving families making the end-of-life journey less terrifying.

A history lesson

Historically, dying has been a natural part of life, and for centuries, people died being cared for by family members. Birthing and dying happened in the home. Enter the 20th century, and hospitals became the place where the majority of dying happened. No longer was birthing and dying a natural part of living, but both became “medicalized” — removed to the halls of medicine where the experts resided. Then, in response to a medical system that didn’t address the multifaceted aspects of dying and an extreme need to do better, the modern-day hospice movement was born. Many dedicated professionals have worked extremely hard to move hospice into mainstream healthcare. 

Hospice nursing

Let’s not forget that hospice care is an ancient art of service. Families have served as the caregivers for each other since the beginning of time. In fact, the origin of the word family (Latin, “famulus”) means “servant, slave, household.” Doulas (from the Greek, “a woman who serves”) have been around for centuries, though more recently recognized for their roles in both birthing and end of life. When I began working in hospice over two decades ago, one of the most satisfying aspects of providing end-of-life care was both the recognition and experience of delivering a truly holistic model of care. More than nursing care provided to a patient in a hospital room with limited visitation, it was seeing and meeting the needs of the patient-family unit with all its intricacies. Just as it takes a village to raise a child, it takes a “family village” to navigate the road of illness and dying.

Nurses caring for seriously ill patients are not just technicians who perform nursing tasks. According to the American Nurses Association’s position statement on Nurses’ Roles in Providing Care and Support at the End of Life: “Nursing care includes not only disease management but also attention to physical comfort and the recognition that the patient’s well-being also comprises psychological, interpersonal and spiritual dimensions. Nurses should have the knowledge and skills to manage pain and other distressing symptoms for patients with serious or life-limiting illness, and to work with patients and their families in palliative and end-of-life care decision-making.”

I have often referred to myself as a death midwife, bearing witness to the deaths of many hundreds of patients. A significant part of my own job satisfaction in hospice nursing has been to know my patients in a deep and personal way. A hospice nurse is privy to an intimate view as a person nearing death slowly wanes, witnessing patients with their families and recognizing how every area of their life is touched by dying. For nurses in this setting, it is not just about the nursing task at hand but also being present and helping to modify some of the difficult aspects of the dying process. It is about seeing the whole person and what is most important and needed on this day to ease suffering and bring comfort. It is about helping someone have the best days possible until their life’s journey has ended.

The grown-up hospice business model

Most U.S. hospices have grown out of local volunteerism and a commitment to do better at the end of life. Just like families through the centuries cared for loved ones through illness and dying, communities volunteered to do more for their vulnerable neighbors. As the locally grown hospice agencies became entities, volunteers were replaced by trained professional staff working together to reduce the physical, emotional and spiritual suffering that so often can eclipse the latter days of a life. 

The birth of our modern-day hospice occurred in the U.S. during the 1970s and early ’80s, and within a few years, government reimbursement for hospice care added to a nationwide growth of hospice philosophy. Now nearly 70% of all hospice agencies are for-profit across the U.S. As the tiny cell that was volunteer-based hospices around the country has grown, business has flourished. 

Some, who have seen hospice grow from its infancy, find hospice more and more difficult to recognize since it has morphed from the early years to the current day. Our medical system specializes in silos. Now a purposeful separation exists between palliative care and hospice care in the U.S. Palliative care as a modality is encouraged to be brought in early in serious illness, not waiting till the late stages of disease or the final days of someone’s life. Some palliative care professionals who advocate for a clear separation have enhanced the division by renaming themselves as “supportive care,” keeping hospice separate to avoid confusing the public about dying (always inevitable, but hushed and waiting in the shadows). 

When I studied at Lancaster University in the U.K., I was afforded a clearer view of the hospice/palliative care division in the U.S. and realized how much more of a continuum palliative care and hospice were in the U.K. In the U.S., some palliative care professionals are clear about their position to help navigate our complex medical system for patients with serious illnesses with quality of life as a focus and not the end of life. Surely some of the same arguments exist, such as who “owns” expertise in death and dying, but much of the cost of dying in the U.K. is shared throughout the communities in a less-profitable, more-charitable way.

The cost of medical care in the U.S. is the highest in the world. (In 2019, Medicare reimbursement for hospice coverage alone was over $20 billion.) But that does not guarantee that we provide the best end-of-life care. The hope is that hospice is analogous to dying a good death. After all, the resurgence of hospice concepts developed out of a discerned need to bring comfort and address the total person at the end of life. Our elderly, infirm and dying should be cared for, if not directly by their families, then by a community and a nation that respond to the need. Simply put, a social requirement of a civilized country is caring for the inhabitants who are debilitated and vulnerable. “The greatness of a nation can be judged by how it treats its weakest members.” — attributed to Mahatma Gandhi (and others). 

Secondary effects of the cash infusion

As hospice dollars have been divided like a holiday pie, numerous factions have benefitted from the multiplicity created. Hospice agencies pay for additional services like pet therapy, music, massage and death doulas — things volunteers used to do. Hospices require extra staffing and large billing departments to ensure government compliance, and productivity levels must be met to maintain financial stability. There are specialized certifications, thousands of publications from funded research, and numerous conference proceedings. Private companies ensure regulatory compliance. Massive corporate mergers combine hospice and health care entities. Various departments within the government oversee the overseers. Hundreds of pages of government regulations must now be adhered to, and hefty fines are levied against hospice agencies that do not comply. Dying has indeed become big business.

There is much profit to be made.

References

Government spending in the U.K.:

https://spcare.bmj.com/content/8/3/250

https://spcare.bmj.com/content/early/2021/02/11/bmjspcare-2020-002708

Medicare costs for hospice:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6610551/

https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/NHE-Fact-Sheet

Hospice Facts & Figures

https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/NHE-Fact-Sheet#:~:text=Hospital%20expenditures%20grew%206.4%25%20to,than%20the%204.2%25%20in%202019.

https://www.commonwealthfund.org/publications/issue-briefs/2020/jan/us-health-care-global-perspective-2019

Institute of Medicine. 2015. Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, D.C.: The National Academies Press.

Dying in America report access: 

https://www.nap.edu/catalog/18748/dying-in-america-improving-quality-and-honoring-individual-preferences-near

Palliative care:

Is palliative care having an existential crisis?
Posted in end of life care, hospice, palliative care | Tagged , , | 2 Comments

WE MIGHT NOT BE SO SURE…

Posted on October 17, 2022 by Amy Getter

I find myself in another paradoxical debate.  I have made my best attempt to find adequate palliative care research being done on managing end-of-life secretions (“the death rattle” people often refer to), and I cannot say I have read sufficient empirical studies that convince me the palliative care community has done its’ job to reduce this troubling symptom.  For families, this distressing symptom heralds a person’s last hours or very few days of life, and is frequently reported as a very upsetting memory for loved ones at the bedside of the dying.  

An ongoing debate is whether to use pharmacological agents to reduce secretions coinciding with other interventions, such as physical management (repositioning) and ensuring good communication with family regarding the “normal dying process”.

I keep reading this statement, or something like it in various forms, in nearly all research addressing secretions at end-of life:  providing “an explanation for patient’s relatives to reassure them the patient is not distressed by (but what may be distressing for their loved ones) the upsetting noise of death rattle”.  

Firstly, I wonder how do we ascertain that the dying patient is not upset, when they are non-responsive? Because we professionals may not observe specific changes in respiratory effort, or other physical observations, do we actually know that our dying patients are not affected or bothered in some part of their being about the “death rattle”?  Or perhaps they have an awareness of their loved ones disturbance by it?  They cannot come back to report to us that those last few days of life were distressful and they wished we had managed their secretions sooner, or better, or done SOMETHING besides tell the family it is a “normal” part of the dying process.  

There are many “normal” things during dying that we try desperately to mitigate (things like odors, incontinence, urinary retention, pain, anxiety, restlessness, to name a few) and no one makes statements that these things are not some form of suffering for the patient, simply because they are not able to say so, or they are so close to dying that we no longer worry about treating these symptoms.

Secondly, I have actually read that hospices are not treating pharmacologically due to the cost of the medications, since there is this ongoing debate “to medicate, or not to medicate”.  How convenient. How appalling.  That a hospice would consider cost-savings and “normalizing” the symptom of terminal secretions because there is a debate in the ranks is NOT justifiable.  The studies that have been performed have a number of issues that need to be addressed before they should be heralded as empirical evidence. Please, all of you who keep repeating that “there is no evidence that a pharmacological approach to terminal secretions is helpful, and may even be harmful” —re-read these many studies carefully, and stop quoting past studies that need to be reevaluated for true evidence-based practice and clinical significance. We might not know emphatically that no pharmacological treatment is the best approach. There is more research needed to be sure we are not minimizing the suffering for family, and potentially that of our patients.

Results of the SILENCE trial: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8493437/

Posted in end of life care | Tagged | 1 Comment

REMEMBRANCE

Posted on May 30, 2022 by Amy Getter

Memorial Day is a day to remember fallen heroes.  Many years ago I stood at the edge of the Meuse-Argonne American Cemetery in France.  I looked out over the vast numbers of white crosses, as far as the eye could see.  Beneath those nearly 15,000 gravestones lay the US servicemen and women who died mostly during the Meuse-Argonne offensive along the western front during the last 47 days of WWI.  I remember my feeling of overwhelming sadness at so many young lives lost.  Yet the crosses represented only a tiny portion marking all the lives lost; the world forfeited more than 9 million soldiers’ lives, and countless more who died from starvation and deprivation as victims of the devastation of the “great war”.

Over one hundred years later, in the past two years, over a million lives are lost from COVID in the US alone.  Three quarters of those gone are people over the age of 65.  A great number of that older generation were past soldiers from prior wars fought, forgotten warriors, many of whom became infirm and marginalized.

In this war waged by a virus, we have witnessed countless dear ones who are no longer here because of COVID. In another country, a leader was quoted – (President Jair Bolsonaro of Brazil)

“With my history as an athlete, if I were infected by the virus I would not have to worry. I would feel nothing or, at most, it would be a little flu or a little cold.”

This attitude has been reflected in a culture that views the elderly as less valuable and more burdensome than the younger generation, initially mirrored repeatedly in articles and speeches that the young needn’t have great concern because COVID wasn’t an issue for them…until it was.  The aged relatives lost to COVID – elder brothers, sisters, parents and grandparents – leave a large hole in family gatherings.  We will miss the wisdom of a long life lived that gave the family depth and breadth. As the ticker tape adds more and more numbers to COVID victims, another concern has been voiced: perhaps we are all becoming a bit immune to the devastating losses.  

As the seriously ill and hospitalized COVID victims still number in the thousands across the US, the nurses and doctors at the front lines of this fight against COVID would tell you that the war is not over nor the battle won. And they are exhausted by it, like those healers in other wars responsible for repairing the carnage. 

We have reached more than six million deaths globally to COVID.  That war isn’t over, and yet there are more wars and rumors of wars that continue.  

Pestilence and fightings mar mankind’s history.  As long as humans inhabit and the earth remains, these will continue.

On this day of special remembrance for the lost warriors, there are also the healers, the ones left behind and all those we’ve lost…

We remember them.  

Posted in end of life care | 4 Comments

HELPLESS

Posted on May 13, 2021 by Amy Getter

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 | 8 Comments

Roy-boy

Posted on April 1, 2021 by Amy Getter

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.  Seven years prior he had survived a cardiac arrest, now he was home from a week-long intensive care stay having survived sepsis.  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 chuxs 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?

Posted on February 9, 2021 by Amy Getter

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

Posted on August 23, 2020 by Amy Getter

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”

Posted on December 29, 2019 by Amy Getter

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 to “do” 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

Posted on August 9, 2019 by Amy Getter

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?

Posted on July 9, 2019 by Amy Getter

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