Nurses Give Their Expert Advice on Understanding the Broken Health Care System

I have been on the lecture circuit. My topic is Empowering the Patient: How to Navigate the Health Care System. Two presentations down and two to go with another in the negotiating stage.

I’m fine-tuning the presentation based on the feedback I have received from my audience each time I give the talk. Sana Goldberg’s recently released book: How to be a Patient: The Essential Guide to Navigating the World of Modern Medicine has added an extra layer of emphasis on the importance of nurses’ influence in the health care system.

She writes:

 

I believe nurses are best poised to change the future of healthcare.

Today, registered nurses spend more time physically present with patients than any other healthcare professional, and as a consequence we see and hear a lot. We maintain a vantage point markedly different from that of the MD, the scholar, the journalist, and the policy maker. We are intimately familiar with the complexity and multiplicity of the patient experience, as well as the systems in health care that fail to acknowledge it. We witness the system’s barriers regularly, and in turn we come up with creative solutions to side step its most vexing realities.

(Sana Goldberg, How to be a Patient: The Essential Guide to Navigating the World of Modern Medicine, page XXIV)

Doesn’t that last sentence remind you of Teresa Brown’s New York Times Op Ed essay that I posted just last week? Side stepping vexing realities is another way of describing the “workarounds” that Brown described.

I’m using another book written by a nurse for my talk. Finish Strong: Putting Your Priorities First at Life’s End by Barbara Coombs Lee, who besides being a nurse is a lawyer and President of Compassion and Choices.

Both books are well written and easy to read and full of great information that older readers will find helpful. And, of course, I am pleased that they are written from a nursing perspective.

Home Visits Can Be Fraught with Danger

 

One time, long ago, at a nursing conference, I sat fixated as a fellow nurse told a story about the time she rang the doorbell at her patient’s house, and he didn’t answer. It was later that she found out he had been murdered. And in hearing more detail, she discovered that the murderer had likely been in the house the exact time she was ringing the doorbell.

Home visits can be fraught with danger.

One time I visited a patient who wasn’t on my list for that day only because I was in the neighborhood and had the time. He was bed ridden and unable to speak. He had a caregiver, a tall, muscular man who wore a long blond wig and make-up but masculine clothes, such as jeans and a sweat shirt. He was attentive and capable and flamboyant. An exotic array of visitors wandered in and out of the apartment. My patient’s mother, strikingly average-looking compared to the rest of the visitors, lived in an apartment above her son’s and was often present when I came. However, this day, unannounced, I walked into an unlocked and darkened apartment. Only my patient, lying in bed, was present.

Neither the caregiver, nor the patient’s mother, or anyone else familiar to me entered the apartment while I was there. However, as I finished with my evaluation, a man opened the unlocked apartment door. He wasn’t anyone I had seen before. In fact, he was unimpressive in slacks and button-down shirt. My patient smiled at him knowingly. We introduced ourselves. His eyes moved down my body. Acutely aware of the precarious situation I was in—alone in that apartment with a strange man and unhelpful patient—a band tightened around my chest. I promptly packed up my nursing bag and left.

Safely back in my car, I chastised myself for making this impulsive visit. No one back at the office knew where I was. It was a time before cell phones. What If something had happened to me . . . .  I didn’t want to think of that. I never again made an unscheduled home visit.

As I work on my second book, which is about home visits, I contemplate my experiences. I want to include the various unsafe situations visiting nurses may find themselves. It’s not just the “iffy” neighborhoods that may hold danger.

For example, I have previously posted a story about a patient that might have been murdered by a family member. When I drove down the tree-lined street in a middle-class neighborhood to make a last follow-up visit to the widow, it never occurred to me that foul play, and not terminal cancer, could have caused my patient’s death.

There are other dangers to home visits, of course. One nurse I knew broke her leg while stepping on an uneven floor; another was attacked by the family dog. Environmental conditions, such as inclement weather, flooded roads and extreme temperatures, are a constant threat to home visits. Once my windshield wipers died on me as I drove on the highway in a snow storm.

Yes, home visits can be fraught with danger.

Leaving Our Legacy

I have been thinking for a long time about the fact that we older nurses are dying off. We will take with us our memories of nursing history. I have always loved to hear from other seasoned nurses about how they size up their nursing careers as they look back. What was important at the time, what were they happy to see disappear, and how do they assess current nursing practice and the future of the profession?

So I decided I would weigh in, occasionally, by spotlighting a nurse of a certain age, i.e., sixty and older, whether this is through an article I have read or by interviewing someone, or through my own stories.

This post is prompted by an article: Diane Saulecke, “There from the Start: A Hospice Nurse Looks Back,” American Journal of Nursing, 7, July 2017, 56-57.

The article features Dianne Puzycki, an 82-year-old nurse, who began to work with the hospice movement when it first started in the early 70s. She still works “the night shift at Connecticut Hospice once a week. ‘I want to be part of it as long as I can,’ she says, ‘It’s become part of my life, my philosophy.’”

 

 

 After graduating from nursing school in 1955, she started her career at Memorial Hospital (now part of Memorial Sloan Kettering Cancer Center) in New York City. There she cared for patients with cancer, many of them young women.

“At that time, we didn’t talk about death and dying,” she says. “We weren’t allowed to talk about that. It really haunted me for years.”

I remember those restrictions well. The diagnosis of breast cancer was withheld from my beloved Aunt Lena. I was in the first year of nursing school but never visited her in the hospital. One evening, when I was talking to my mother on the phone, I asked, “How is Aunt Lena?” “Just fine,” my mother said. That’s when I knew she had died. My mother would give me the bad new when I next went home to visit.

Puzycki mentions that she heard both Cicely Saunders, a doctor who founded the first hospice, and Elisabeth Kübler-Ross, who opened up discussion on dying through her 1969 book On Death and Dying. The early 70s were heady times in health care as discussion heated up regarding the previous taboo of being honest with patients by telling them their cancer diagnosis.

Kübler-Ross’ book was the subject of a workshop for the medical staff at the time I worked for a community hospital in the early 80s. To this day I remember one of the surgeons storming out of the classroom after loudly protesting, “my patients don’t want to hear that they have cancer.”

Being present for patients and “picking up on the little things” is to Puzycki the key to hospice nursing. And she says that seeing the compassionate actions taken by her colleagues, especially the younger ones, makes her feel hopeful about the future of the profession. She recently saw, for example, a fellow nurse lean down and kiss an elderly patient on the head. “I said, ‘That’s a good hospice nurse.’”

 

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TRICK OR TREAT AT THE FRONT DOOR; HEARSE AT THE BACK

Reblogged from September 20, 2012. Happy Halloween.

Nursing Stories

I have been pestering my classmates from nursing school (we are about to celebrate our fiftieth anniversary next month) to write their stories so I can post them on my blog. Maybe pestering is too mild a word. Regardless, I have succeeded. Two women have sent me stories.

The first comes from Joan Moore. 

This is her story when she worked for a Hospice in Central New Jersey in the late 1990’s.

THOUGHTFULNESS IN THE FACE OF GRIEF

Written by Joan Moore

One of the most important aspects of hospice nursing is that a nurse is available 24/7 for the patients. This means every nurse on the team is required to take a turn being “on call”.

I’d like to share one of my many on call experiences.

My weekend started quietly. It was a Saturday in October. Halloween. In that neighborhood when Halloween falls on a weekend, the kids…

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A Hospice Nurse is Featured in The New Yorker

Larissa MacFarquhar is a staff writer for the New Yorker. She has written profiles on “do-gooders,” people whose altruistic acts “spring from genuine empathy.”

Her subjects are varied: Quentin Tarantino, Diane von Furstenberg and Paul Krugman. Most recently she spotlighted Heather Meyerend, not a famous person, but a nurse. Her story starts on page 62 in the July 11 & 18, 2016 edition of The New Yorker, titled: The Threshold: A hospice nurse’s encounters.

“Heather Meyerend is a hospice nurse who works in several neighborhoods in South Brooklyn—Sheepshead Bay, Mill Basin, Marine Park, Bensonhurst, Bay Ridge. She usually has between sixteen and twenty patients, and visits each at home once a week, sometimes more. Some patients die within days of her meeting them, but others she gets to know well, over many months. She sees her work as preparing a patient for the voyage he is about to take, and accompanying him partway down the road. She, like most hospice workers, feels that it is a privilege to spend time with the dying, to be allowed into a person’s life and a family’s life when they are at their rawest and most vulnerable, and when they most need help. Some hospice workers believe that working with the dying is the closest you can get on earth to the presence of God.

Heather is not brisk or efficient, as nurses in hospitals are. She is purposely inefficient, in fact. Most of the time when she visits patients, she doesn’t have much to do: she takes vital signs, she checks that there are enough supplies and medications in the house, she asks if old symptoms have gone away or new ones developed. If she were rushing, she could do all that in about five minutes, but her visits usually last an hour or more. Sometimes there is a complicated medical situation to take care of. Sometimes she does something non-medical that needs to be done, which is the hospice way—she might sweep a floor, she might heat up dinner. But, even when there’s nothing else to do, the idea is to be around longer, to chat, to sit close by, to put her hands on the patient’s skin as she goes about her checkup. Her visit may be the high point of the day for the patient, who may not be able to get out of bed, or for whoever is taking care of the patient, who may not have left the house or seen anybody else for a day or two; either or both of them may be going a little crazy and may badly need interruption or variety of any kind, ideally someone different to talk to. So Heather moves slowly; she sits down; she delays; she lingers.” (Italics mine)

 

 

Heather Meyerend examines Mary, a ninety-two-year-old woman, at her home, in Marine Park, Brooklyn, in September, 2015. Mary died later that month. Heather believes in caring for the whole person, body and mind. PHOTOGRAPH BY EUGENE RICHARDS FOR THE NEW YORKER
Heather Meyerend examines Mary, a ninety-two-year-old woman, at her home, in Marine Park, Brooklyn, in September, 2015. Mary died later that month. Heather believes in caring for the whole person, body and mind. PHOTOGRAPH BY EUGENE RICHARDS FOR THE NEW YORKER

 

Weaving throughout Heather’s story, MacFarquhar gives us the scope of hospice:

“Hospice believes in caring not only for the patient but also for the family, and tries to address psychological and spiritual needs as well as physical ones, providing social workers and bereavement counsellors, music therapists and chaplains, who work together as a team and consult one another frequently.”

And the history of hospice:

“The first modern hospice was founded in 1967, in London, by Cicely Saunders, who was both a doctor and a social worker: she wanted to offer homelike care that aimed to provide comfort and serenity rather than to prolong life. Two years later, Elisabeth Kübler-Ross’s book “On Death and Dying” focussed public attention on the idea of the “good death.” The first American hospice opened in 1974. In those days, hospices were small nonprofits staffed mostly by volunteers; but in the mid-nineteen-eighties Medicare began to cover hospice, and now roughly twice as many people in America die in hospice as die in hospital.”

And an overview of the dying process:

“As the end approached, patients sometimes fell into an agitated delirium in which they saw people from their past appear in front of them as they lay in bed, often people who had died years before. This happened more often than Heather had expected—to about a third of her patients. The spectres appeared sometimes sitting in a chair by the bed, sometimes standing near the door. Often, a dying patient saw his mother or his father in the room, waiting. Sometimes these spectres were welcome: it seemed to the patient as though someone he loved who had gone on before had come back to accompany him to a life after. But other times the spectres were terrifying. Sometimes a patient believed that someone was running after him, out to get him; sometimes he was haunted by someone he had hurt long ago.

When death drew closer, a patient usually began to withdraw, not wanting to see people, and talking less if someone came. He began to sleep more. There was a kind of quieting, a kind of drawing in, as if he needed time to prepare. He might open his eyes for a minute and smile, but then he closed them and returned to wherever he had been. Hearing was the last sense to go. The patient might seem to be asleep or far away, but still he might hear what his family said around him. People tended to whisper around a dying person, so Heather might say to them, Don’t whisper! Talk, play music, he can still hear you.

When death is imminent, the breathing changes, and discoloration begins. The skin under the nails starts to get cyanotic, to turn blue. The legs grow dusky and cool. When Heather sees these signs, she calls family members who aren’t there and tells them, If you want to be here, this is the time. But she has seen, many times, that the patient seems to choose whom he wants there at the moment of death. Sometimes he waits for someone to arrive; but just as often he waits for someone to leave. Heather would see a husband or a wife or a child sit by the bedside day after day, hour after hour, and then he or she would say to the patient, I’m just running out to the market for ten minutes to get lunch, or I’m just going to take a shower, and that would be the time the patient would go. This happened over and over again. She wasn’t sure why. Maybe the dying person wanted to spare his spouse or his child the grief, or maybe it was harder to let go with that particular person around. Maybe dying was just easier to do alone.

If Heather was there when the end was very near, she would ask if the family wanted to gather together in the room. Then she would hang back, leaving the family to say goodbye. If the family were Christian, and if they had talked about that before, she might ask if they wanted to pray together. If the family were not Christian, she didn’t want to impose her beliefs, so she prayed silently in her head: God, here is this person, have mercy on him.”

“The patient’s breathing changes. He might stop breathing altogether for half a minute or so, and then start again. Then he stops again, but for longer. Then starts again, but shallower. This means that death is very close. For a person who hasn’t seen dying before, this strange, unpredictable breathing can be bewildering, a horror: because of the irregular intervals between the breaths, there is no knowing until a while afterward which breath is the last. Just before it happens, there is a staring. The eyes don’t focus anymore. The person is not there behind the eyes. Even so, Heather may need to step forward, after waiting some time, because the family may not know that the patient is dead.”

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Impressive how MacFarquhar entertains and educates The New Yorker reader about both hospice and the life of a hospice nurse, topics not usually given such high visibility. It’s the attention to Heather’s interactions with her patients that I so enjoyed reading. You see, I once worked as a hospice admissions nurse. The immediacy of connection with the patient and family could be overwhelming. I never knew what I would find with each new admission—anxiety, fear, apprehension resided in most households. The caregivers, who could be spouses, friends, siblings, adult children, and parents, had to learn about medications, side effects, how to care for the patient, and be prepared for the final outcome, death. It was not a time to rush with instructions. I knew that assessing strengths and shortcomings of the family unit would save problems later on. I loved my job.

One day, the supervisor pulled me aside before I left to see my first patient. In the chill of an empty hallway, she told me I was too slow. Not that I was performing poorly, but that I was too slow.

I knew “too slow” meant that I was costing the organization money. But I also knew I was doing a good job as evidenced by the frequency of hugs I received from the family/caregivers before I left, and the appreciation from the nurses who took over the care of those I had admitted and went out of their way to tell me, “the caregivers are always so well informed.”

It saddened me that management didn’t appreciate my efforts. I didn’t want to work for an organization that valued the bottom line over patient/family satisfaction.

And since I didn’t want to be faster, I quit.

It’s clear MacFarquhar’s did her homework, depicting the specialness of hospice and a nurse who chose to work there. Hospice is not the same as an acute care hospital. The patient and family needs are different and there is no need for hurried nursing care. What is necessary is a nurse who lingers.