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)
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.”
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.
I wish everyone could read this. We all can stand to understand the concept of hospice better and also the role of the hospice nurse.
Hospice nurses are like the Calvary, coming to rescue the patient’s needs and help their last remaining time be as comfortable as possible. Hospice allows the family to be family, and not so responsible for hands-on care. As a nurse I shadowed another nurse for a day, and she, like Heather, lingered. When one patient refused her visit that day, she agreed to leave, “but before I do, could I check your oxygen tubing?” In another few moments he asked her to find his slippers and then please fix some buttered toast. They talked more about his cat than how he was feeling, and he obviously enjoyed that. This non-visit went on for an hour, until his wife came home. She had questions about his meds, and there went another 20 minutes, but never did the nurse seem in any hurry.
My father was their patient in his home for only 24 hours, but the nurses were there in 8 hour shifts and made him much more comfortable than I had been able. A few hours before he slipped into the first sleep he had had in days, I was grateful to hear him tell the day nurse he was thankful for their care . He passed away without the fear of being in pain.
This is wonderful, and particularly relevant to me right now. I’m watching my mother-in-law, aged nearly 97, approach the end. She’s been in hospice care and in a skilled nursing facility for over a year. What would we ever do without the dedication of the nurses, aids and social workers who give her such excellent care?