Category: Healing and Helping Professionals

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Against the Dying of the Light

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“Did you know that your patient in 1152 just passed away?”

 

Krishna Constantino
Krishna Constantino

[E]veryone at the nursing station turned silent and looked at the nurse who had delivered the news. I looked at her in disbelief, my brain struggling through a fog of confusion and surprise. I squinted at my patient list trying to remember who was the patient in 1152. Recognition finally hit and I remembered the little old lady that we saw during rounds two hours ago. I remembered gazing at her frail, tiny body and her pale, listless face and how we tried to communicate with her to no avail. We knew she had a Do Not Resuscitate (DNR) status and we knew she was really sick, but we had no idea it would happen so quickly!

Since there was no response from either me or the intern that I was following, she mumbled a hasty, “I’ll go call the family,” and left. I looked at my intern for guidance and I saw that he was staring at the floor, hands resting on top of his knees. It was a surprise for me to see him like this, far removed from his usual confident manner. Death had completely floored us both.

Doctors and other medical professionals have a more frequent and intense contact with death and dying compared to the rest of society creating a need for end-of-life care in medical curricula. However, multiple studies on medical students’ reaction to death show that most medical students feel inadequately prepared by their undergraduate medical curricula for experiences related to end-of-life situations. Death is introduced early in our medical training inside the gross anatomy lab. The absence of any identifying features made those hours spent in anatomy lab easier. Death takes its toll and what is left is an empty husk where a person used to exist. After anatomy lab however, there is very little exposure to the idea of death and dying. A survey of medical students from Duke University showed that the average medical student had experienced fewer than five patient deaths prior to graduation. In addition, few students experienced how to declare a patient dead and none received any formal training on this end-of-life skill.

I, on the other hand was not destined to be part of that statistic. After what seemed like an eternity, my intern rose up from his seat and dashed to another part of the hospital to seek out his senior. After discussing the turn of events and the necessary course of action, our little group convened in front of the door of the patient’s room where I received my first education on the procedure of declaring a patient death.

I lingered close to the door with a bit of trepidation. She was laying in the same position that I had last seen her two hours ago — face to the window, eyes closed. Her mouth was slightly open and for a moment, I merely thought that she was asleep.

“First, we need to check for reflexes. In here, we use two: the corneal reflex and the gag reflex.”

I watched in silence as both the resident and the intern performed these tests — all without a response. I watched as they both tried to feel a pulse. I watched with bated breath against all hope that there was still life ebbing underneath those veins. I let it out, deflated when both of them shook their head no.

As soon as we walked out of the room, I overheard my intern echo the exact same thought in my head. “Do you think we did anything wrong?” A hundred what-ifs welled up inside me. Was there truly anything we could have done to prevent this death? Modern medicine views death as something that can be resisted, if not avoided. This view of death is further compounded upon by modern society’s view of death which delegates all responsibility to physicians. While it is widely accepted that death is inevitable, it is the physician’s task to ensure that the patient is as far removed from death as possible. As Rudyard Kipling in his address to the medical school of Middlesex Hospital stated, “Death as the senior practitioner, is always bound to win in the long run, but we patients, console ourselves with the idea that it will be your business to make the best terms you can with Death on our behalf; to see how his attacks can best be delayed or diverted.” Little wonder that throughout medical education, death is continually seen as a failure.

Although medical schools are now integrating end-of-life care in its curricula, medical education should also engage students in a frank discussion of death and dying. Only by facing death head-on do we dissipate its power over us. The fear of the unknown has always been part of death’s icy grip over us but what if we learned to “disarm him of his novelty and strangeness, to converse and be familiar with him” as Michel de Montaigne recommended many centuries ago when death was commonplace and lifespans were short. Had I chosen to avoid that room, I would have missed out on one of the most important lessons in my medical education.

Each one of us has ideas surrounding death. I have always imagined death to be more dramatic than what I had experienced. In my mind, I keep seeing an entire healthcare team running back and forth — all working together to snatch the patient away from the jaws of death. However, my patient simply slipped away quietly, almost underhandedly. The way that she passed away seemed natural — as if she were merely falling into an eternal sleep. Gone was the drama, the action, the struggle for life. In its place was peace and acceptance of the inevitable.

This in turn gave me reason to think that perhaps, death is not a failure of medicine but rather a crucial part of being alive. Oftentimes, the best lesson in learning how to live is learning how to die as we see in the works produced by the likes of Oliver Sacks and more recently, Paul Kalanathi. As surgeon and Yale professor Sherwin Nuland wrote, “We die, in turn so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life.”

Complete Article HERE!

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Hospice nurse Renee Beccue helps ease patients’ last days

Hospice care provides a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.

By Melisa Rile

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Renee Beccue

Renee Beccue helps ease the process of dying.

She is an on-call registered nurse with Lower Cape Fear Hospice in Wilmington. Beccue, originally from Buffalo, N.Y., had primarily worked in intensive care units with burn patients.

She had accompanied doctors when they announced deaths of patients to their families and saw that this experience could allow her to transition into hospice nursing.

“Hospice and palliative care is a growing field,” said Beccue.

Part of what hospice care provides, is in-home equipment for patients, such as hospital beds, so they can spend their last days in the comfort of their own home. There is also a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.

And while hospice doesn’t provide in-home, around-the-clock medical care, it does have providers on call to help manage medical needs.

That’s where Beccue comes in.

Beccue doesn’t have a fixed caseload of patients, but she receives calls at night when hospice patients are in need of medical care that the family or caregiver feels is outside their capability. Beccue travels to a few counties for on-call needs, including Onslow and Pender as well as New Hanover.

The calls she receives can be anything from discussing fall prevention to pronouncement of death. Part of the medical care received in home is to help the patient remain in the home with fewer trips to the hospital.

“We try to prevent readmission to the hospital,” Beccue said.

Her care as a hospice nurse is twofold, therapeutic listening and education. Education consists of teaching the family or caregivers the basics of caring for a sick person who will continue to decline. Beccue calls this the “palliative care mindset, not curative.”

She teaches the family to change the bed and bathe the patient while he is still in the bed. Beccue says the care needs of hospice patients are constantly changing because they continue to get sicker. She also teaches the family what they can expect to see from the patient depending upon his disease.

Beccue also helps patients understand what they are experiencing. She consoles them and emphasizes the importance of “judgment-free” care as a hospice provider. Beccue realizes that many people are not familiar with the medical terms being used and she sincerely tells families and patients to call her with any questions.

Beccue primarily tends to the patients’ medical needs, but in the process of dying, people often work through a life review. Many patients do not truly grasp their prognosis for a variety of reasons until Beccue arrives at their home. She sometimes helps patients face the truth that she has been assigned to them because they have a prognosis of six months or less left to live.

“That’s when they cry,” Beccue said.

She tries to be the voice of reason and help them to understand that the feelings they are experiencing are normal. She can assist with adjusting medication when anxiety is overwhelming and to help mitigate physical pain.

Beccue says it’s important to allow patients to feel. “You can’t make a stage 4 diagnosis nice,” Beccue said.

She has seen patients move through bitterness, anger and unresolved issues and hospice does provide social workers to help counsel the patient through that process.

While death is frightening for many people, Beccue sees it as a part of living. And death isn’t all scary and sad. Many times she turns on music for patients, helps them sit by their favorite window and watch the birds they’ve enjoyed their whole lives. Also, the presence of beloved pets is important to comforting patients.

Some patients want to sit and look at the garden they worked in for years. Beccue says one patient asked to sit by the window and watch the golf course every day.

After years of being with hospice patients Beccue has learned a few tips about working with the dying. She recommends being upfront and honest about prognosis, allowing honest feelings about that prognosis and ultimately finding peace and joy in death, which is the ultimate rite of passage for all of us.

Complete Article HERE!

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BEARING BAD NEWS

The way doctors give patients bad news can teach us all something about how to have hard conversations

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[I]t’s not uncommon for Andrew Epstein to spend sleepless nights replaying scenes from his day and wondering what more he could have done for his patients. Often, the answer is nothing—but that still doesn’t help his insomnia.

Epstein is an oncologist at the Sloan Kettering Memorial Cancer Center in New York. His job requires conversations with patients who are extremely sick. Sometimes, he’s breaking the news of the severity of their illness to them; other times, he’s telling them the treatment they thought may work has failed, and it’s time to begin preparing for end-of-life care.

Each encounter is so emotionally draining, he can only do it for about half of the week; he spends the rest of his time preparing for future conversations with new patients, or recovering.

Telling patients and their families that they must face their own mortality is one of the most difficult things that has to get done in the medical profession. Most patients want to have conversations about care at the end of their lives, but often don’t end up having them—probably because many doctors are not prepared to do so, despite training as part of medical school.

Not all of us will have to have these kinds of grim conversations, but we will all have to disappoint people at some point. Maybe you won’t ever have to tell someone they are going to die, but you might have to deliver a bad performance review, let someone go, or break up with a partner. It will never be seamless, but there are ways to be a better bearer of bad news, and lessen the emotional pain for others.

“It’s all about self-awareness, preparation, respect for others and inquiry into [their] perspective,” Epstein says.

First, you have to actually call a meeting—don’t wait for a chance encounter to deliver of bad news, and don’t put it off. “You want to have a comfortable, private setting, arrange for the meeting, and don’t meet any later than necessary,” says Jayson Dibble, a communication specialist at Hope College in Holland, Michigan. Delaying bad news means the recipient has less time to react and move on.

Setting the appointment shows that you are giving your full attention, and allows whoever you need to talk to the time to prepare themselves emotionally for the news, even if they don’t know exactly what that news is. It shows that both you are willing to commit your time to them, and that you respect the time they are giving up for you.

Once you’ve set the meeting, you need to get fully prepared. Epstein pours over his patients’ charts and imagines himself in their shoes, trying to figure out the questions they are most likely to ask. He also makes sure that he’s ready to translate medical jargon into practical facts the patient can use to make a decision about their care.

001“Doctors are explain-a-holics,” he says. Understandably, medical professionals don’t want patients to lose hope, so they’ll start going through all the additional tests they could run and explaining all the experimental treatments available the patient could try. This, though, is a form of stalling, and doesn’t give the patients the information they actually need to hear.

To avoid being overly optimistic, take time to think about why you need to have this particular conversation, Dibble says. In most cases, the goal is to give the person you’re talking to what they need to take control of their situation.Compassion is important, but being too hopeful may give the impression that the situation is not as serious as it actually is—which may lead whoever you’re talking to react improperly, and end up worse off later on.

Keeping these end goals in mind can help frame the discussion. Consider breaking up with a partner: It’s never to hurt his or her feelings. The end goal of dating is to find someone you want to pursue a deeper relationship with. Both people deserve to feel respected and loved, and if one person can’t give that to the other for whatever reason, both are missing opportunities to find someone else who can. Or think about the workplace: if your job is to give a negative performance review to an employee, it’s not to make her feel incompetent; it’s to figure out how to make her (and the company) better.

Epstein has found that one of the keys to successfully communicating the most grim is getting to know the patient’s values in advance. As surgeon and writer Atul Gawande notes in the New Yorker, “People have concerns besides simply prolonging their lives.” Patients often prioritize the quality of their remaining time, making decisions based on how long they’ll be able to care for themselves, converse with loved ones, or keep up certain hobbies.

Once you have a plan of the information and its framing, there’s the actual delivery. When actually speaking, “be polite, but clear,” Dibble says. “If you don’t know the answers, it’s okay to say ‘I don’t know.’”

As much as you may want to speak to fill the silence after saying your piece, you shouldn’t. “After the bad news, we [tend to] fill the silence with a lot of words, and instead what we should do is shut up,” says Epstein. When doctors continue to spew out medical jargon, he says, it’s a way of making an uncomfortable situation more comfortable for them, rather than those they’re caring for. “In the end, we do the patient and family a disservice.”

002In fact, you should take advantage of pausing, Dibble says, because it gives you and the receiver an extra moment to digest and prepare for the next bit of info. Often, we can’t fully comprehend new information when our brains are occupied with too much emotion. It’s one of the reasons that eye-witness reports for crimes are often unreliable: when stressed, we can’t store new facts thrown at us.

In order to help the recipient process information, you should acknowledge and validate some of those initial emotions. When patients are faced with devastating news, they won’t be able to digest practical information right away, Epstein explains. “They need quiet, and then some phrase to address their emotion, to empathize,” he says.

There’s no one way to go about this part, though. Not everyone reacts to bad news the same way. Some people cry, others get angry, and others remain stoic as shock sets in. Others will demand a reason why they’re hearing this painful news. Depending on the person you’re speaking with, you may have to adapt your strategy as you go along to address their needs while keeping the end goal of the conversation in sight.

There are some mnemonic devices that health care professionals use to navigate these situations. For example, NURSE stands for Naming an emotion, Understanding and Respecting the patient’s reaction, offering Support, and asking him to Explain what they’re feeling further. There’s also SPIKES, which stands for Setting up an interview, assessing the patient’s Perception, obtaining the patient’s Invitation, giving Knowledge and information, addressing the patient’s Emotion, and Summarizing the conversation” But, these should be guidelines—not a strict framework. “If used badly, it would sound robotic,” Epstein says.

In order to be fully present, empathy is key—continually imagining yourself on the other side of the conversation will help you be as generous and respectful as possible. But it’s also important, Epstein says, those delivering bad news need to know their own emotional limits. “If you get too emotionally mired in it, the care of other patients will suffer and you’ll burn out,” he says.

Complete Article HERE!

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‘Just say death!’ Plays teach healthcare workers about end-of-life care

Dying is taboo among health and care professionals who sometimes prioritise medical initiatives over individuals and families

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Don’t Leave Me Now, a play about early onset dementia, was performed at St Gemma’s hospice in Leeds to an audience of healthcare professionals.

[S]eth Goodburn seemed fit and well until two weeks before he was diagnosed with pancreatic cancer. He died just 33 days after diagnosis, spending much of that short time in hospital. In the emotional whirlwind of coping with the poor prognosis his wife, Lesley, felt their hopes for Seth’s end-of-life care were sidelined by medical professionals trying to do their job.

“The NHS focuses on the medicine and trying to fix people even when that’s not possible,” she says. “A lot of the conversations and decisions that we might have made were overshadowed by dealing with what was the next medical treatment and intervention.”

There is an ongoing conversation in the medical profession about how to care for terminally ill patients, given that the profession’s instinct is to preserve life. The issue is just one of many being address by Brian Daniels, a playwright commissioned by the National Council for Palliative Care (NCPC) to tell stories such as Goodburn’s through plays, and help educate healthcare professionals about patients and families’ experiences of end-of-life care.

Homeward Bound, a play based on a series of letters Lesley Goodburn wrote, in the months after her husband’s death, to medical professionals involved in his care, launched NCPC’s national conference this year to an audience of 300 healthcare workers.

In addition, Daniels’ plays on early onset dementia and palliative care for those with disabilities, have been performed in hospitals, hospices, care homes and to general audiences across the country. Daniels says: “[They] take people out of their professional role for a minute to look at the family and human side of the people they’re dealing with.”

For Goodburn, that human aspect is key. She could not fault the professionalism of those involved in caring for her husband, but says poor communication could leave the couple feeling worse. “There were just so many things where people weren’t cruel or unkind or deliberately unthinking, but just didn’t really think about what it was like to be me and Seth. He went from being well and living a normal life to suddenly being told that he was dying.” She says, for example, a physiotherapist asked Seth to march on the spot as part of an assessment to see if he was able to go home, as he had previously wished, seemingly unaware that his condition had deteriorated and he was dying.

An actor in Don’t Leave Me Now.
An actor in Don’t Leave Me Now.

Claire Henry, chief executive of the NCPC, says plays such as Homeward Bound are designed to encourage medical professionals to reflect on the people going through this traumatic process. “We obviously work very closely with people who have experience and they tell us their stories. Some are good, some not so good. Healthcare professionals don’t go to work to do a bad job, but sometimes they don’t think of things that affect people in a broader sense.”

What impact does a play have that a lecture, for instance, cannot? Don’t Leave Me Now, another play by Daniels, about early onset dementia, was performed at St Gemma’s hospice in Leeds to an audience including nurses, housekeeping staff and workers from other local hospices. Dr Mike Stockton, its director of medicine and consultant in palliative medicine, says the play enabled them to see some of families’ and patients’ challenges through a different lens. “It’s sometimes hard to have a full understanding … of what people may be going through and the reasons behind their actions or the emotional challenges, adjustments or the resilience that people need.”

Lynn Cawley agrees. There was barely a dry eye at a performance at Morley Arts Festival in October of Bounce Back Boy, the powerful dramatisation of her adopted son, Josh’s, story. Josh was severely disabled following a serious head injury as a baby, and later adopted by Cawley. Despite pioneering medical treatment throughout Josh’s life, Cawley says he was denied admission as an inpatient to a local hospice because his needs were too complex, and died a difficult death at home. She is fighting to end what she describes as end of life discrimination against those with disabilities.

Cawley thinks a play is an effective way of communicating that message, and for getting people to think about palliative care more broadly. She says: “When it’s someone’s real life story, people put themselves in it [and] they might think of a patient that they know. We hope that it will change policy but also people’s attitudes.”

For Stockton, working in a hospice, the wider issue of how treatment is balanced with patient comfort is a daily consideration. He says the two can often be done together: “It is about having early, thorough, open, honest, transparent conversations with people about what they want.”

For Cawley, as a carer and mother who went through the palliative process, those open conversations about dying are key. “We even find it hard to say the word,” she says. “When we’re watching Casualty on a Saturday night and they’re trying to tell a relative that somebody is dying, but they won’t say the word dying or death, we’re just like – say death!”

Complete Article HERE!

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Why I Decided To Become A “Death Doula” At 33

By Christine Colb

[E]vi Numen, 33, of Philadelphia, could be considered a little death-obsessed. She’s the curator and founder of Thanatography.com, a site that showcases the work of visual artists exploring the themes of death, grief, and loss. Previously, she worked at the Mütter Museum, known for its collection of medical oddities and pathological specimens, such as presidential tumours, murderers’ brains, and books bound in human flesh. She has also recently added a line to her résumé — she’s a “death doula” in training — one of the first in the United States.

Evi Numen
Evi Numen

Numen can be excused for being a little morbid. When she was 20, she survived a car accident that killed her partner on impact. Earlier that night, he had told her he was going to propose. While in the hospital recovering from her injuries and raw with grief, she kept asking if she could see his body in the morgue. “I needed to confront his death to truly believe it,” Numen says. “My doctors thought I couldn’t take the sight of him, dead and broken, but to this day I believe it would have helped. Seeing him in his coffin during the funeral a week later felt staged and artificial.”

Last April, when her late partner’s father was in rapid decline with cancer, Numen rushed to his side. “I held his hand, listened, and talked to him when he could, and also allowed his loved ones to take a break from the bedside. What I couldn’t do for my partner, I tried to do for his father.”

A large part of the assistance Numen provided was for his family. “I had to remind them it was okay to take care of their own needs. I couldn’t “fix” anything, but I could bring food so it was there when people needed it, or stay by the bedside and encourage family members to go for a brief walk to get some fresh air.”

Caregivers [of the dying] often need to be ‘given permission’ to care for themselves properly.

 
After her partner’s father died, Numen knew she had found her new calling. She did some research and found the International End of Life Doula Association (INELDA). “Immediately, I knew this was the right next step,” says Numen. Cofounded by former hospital social worker Henry Fersko-Weiss in February 2015, INELDA trains people to provide emotional support for the dying — and their family members. Ferko-Weiss was inspired by the concept of doulas who support a mother and her partner during pregnancy and childbirth. “I kept seeing people die in ways that I thought were unfortunate or even tragic. I was trying to figure out how to change that. To me, the principles and spirit and techniques of birth doulas could be interpreted and adapted for the end of life,” says Ferko-Weiss.

A certified death doula can help not only the dying person, but will assist their loved ones throughout the entire death process, from coming to terms with mortality weeks or even months before the death to remembering and memorialising their loved one after passing.

Numen took a 22-hour training with INELDA and has logged more than 20 hours of volunteer training at two different area hospices. She’s been coached to become familiar with the physical changes the body goes through directly preceding death — and in helping comfort and counsel the dying person and their family from the point of a terminal-illness diagnosis all the way through even a year after a death. “I think many of us have the tendency to be problem-solvers and try to offer solutions to someone who is hurting, but there is no solution to dying,” Numen says. “It is easy to develop the habit of offering platitudes to such a situation, such as, ‘This too shall pass.” But that’s not actually comforting to a grief-stricken person. I know this from my own experience. Instead, I serve as an active listener, letting the other person really talk about all their conflicting emotions.”

Numen says that one of the most fascinating parts of her training was learning how to recognise when the person is “actively dying.” “Most of us know what the birthing process is like — foetal development, labor, contractions, water breaking, and such are fairly common knowledge in the Western world. Yet very few of us know anything about what it looks like to die: Your appetite decreases, your skin changes colour, breathing sounds different. There is a huge discrepancy in how we view the two ends of human life. It is easy to see how such ignorance about death can lead to avoidance and fear.”

Numan had asked the nurses at a hospice where she was volunteering to call her if they needed someone to keep vigil for an imminently dying patient, especially if their family couldn’t be there. “My objective was to be with the person who needed me the most,” she says. She was called to the bedside of an elderly man in end-stage pulmonary disease. He had no family present and was unable to communicate. She was his sole companion in his final moments. She knew from her training that he only had a few hours of life remaining.

Over the course of seven hours, Numen played Clint Mansell, Erik Satie, Rachmaninoff, and Chopin on her iPad as she sat by the man’s bedside and watched him breathe. “His breath cycles grew further and further apart, but only by seconds, which to me felt like minutes as I found myself holding my breath with him,” says Numeb. “I knew he was very near. Within an hour, his breath got steady but oddly mechanical, more like a reflex than an action, and then the next inhale never came. I called the nurse and she confirmed the death. It was easier and more peaceful than I thought it would be, and yet it affected me more than I expected. I had, after all, trained for this, read about it, and kept vigil to other dying patients, but his passing was the first I had witnessed.”

Despite all her preparation, Numen was so deeply affected by the experience that she had to skip her next scheduled shift. “Being there for that man, when no one from his family was able to, affected me more than I thought it would,” she says. “I didn’t cry — I felt it wasn’t my place to, like I was just a stand-in for his family. There is a weird sense of intruding, especially when keeping vigil for complete strangers, that I have not been able to reconcile yet.” It also had a personal resonance for her. “Witnessing a death brought up the other losses in my life, and I had to honour these emotions before I could return to keeping vigil for someone else,” Numen explains.

Witnessing a death brought up the other losses in my life, and I had to honor these emotions before I could return to keeping vigil for someone else.

 
Despite her unanticipated reaction, she is even more committed to her calling of caring for the dying than she was before. “It wasn’t gross or scary, but it was certainly difficult. Every death will be different, and maybe it will get easier or less nerve-wracking, but it will not get any less worthwhile. Even if I never get to talk with the patients I attend to, knowing that I brought some small amount of comfort is enough.”

She’d also like to see more people become comfortable with ageing and the dying process. In a culture where ageism is rampant, Numen has found that learning about the end of life has actually made her less apprehensive of getting older — and the inevitable end. “Most of the patients I’ve seen close to death were peaceful and tranquil. They seemed comfortable and had this beautiful glow about them, this serenity that I didn’t expect to see. I’m still fearful of sudden death and the suffering of prolonged illness, but not of the dying itself.”

Numen also hopes that more family members will recognise that a death doula can be an option that can bring enormous comfort in someone’s final moments. “It’s about regaining control over an uncontrollable process,” she says.

Complete Article HERE!

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The transition from curative to palliative care

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[K]athryn Martin, registered nurse and Faculty Lecturer in the Faculty of Nursing, doesn’t attend the funerals of her deceased patients. But she knows nurses who do.

“You become quite close with the families,” Martin says. “It’s okay to have feelings about the situation. I respect other nurses attending funerals, but I personally don’t (attend). It’s important to set your own boundaries.”

Martin says decades of working in the intensive care unit have made an impression on her. The ICU is a hospital unit dedicated to treating patients with severe and life-threatening conditions. She remembers cases from years ago with vivid detail, and feels she has made a difference in the lives of her patients.

Nursing is a complex and dynamic profession. RNs work with patients and families around the clock, and are often advocates for patients and their families. Nurses advocate for time, information, increased pain medication, spiritual services, and any other needs families may have.

One of nursing’s significant challenges is transitioning patients with life-limiting illnesses — illnesses in which death is the expected outcome such as cancer, heart disease and dementia — from curative to palliative care. The goal of curative care is to modify a disease, either through management or working towards a cure. It can involve intense medication regimens, 24/7 nursing care, repeated hospital stays with limited visiting hours, and it isn’t often provided at home. Palliative care, alternatively, focuses on comfort as opposed to modifying or curing a life-limiting condition. It is provided both at home and in health facilities such as long term care centres or hospitals. Common aspects of palliative care are reduced invasive procedures and increased
pain medications.

When the transition between curative to palliative care goes well, the grief impact on families is minimized and the work experience can be satisfying for health care professionals. When it doesn’t, many walk away with feelings of hurt, failure, and of letting loved ones or patients down — people close to patients often interpret the transition as medical professionals letting patients die. An article in the Journal of Palliative Medicine reports that during the five years previous to 2012, at least half of the physicians surveyed had experienced a patient’s family members, another physician or another health care professional describing their palliative methods as “euthanasia, murder or killing.”

“Transitioning from curative to palliative care is anything but a static process,” says Kristin Jennings, an RN experienced in palliative care. “Unfortunately, (to some) it feels as though our medical system gives up hope.”

In spite of treatment that can be harsh, palliative care is not diagnosis-centred, but person-centred care. It focuses on the needs of all key players: patients, families, caregivers, and loved ones with hopes of creating the most possible value in a person’s last days, weeks, or months. It is a broad category, encompassing anything from the removal of life support to increased pain medications.

The increasing prominence of palliative care in the past decade is a marker of change in medical thinking towards a more holistic model of care. Palliative methods are now initiated much earlier in treatment than they have been in previous years and are starting to be provided concurrently with curative methods. Comfort matters, and it matters throughout the entire experience of illness.

“In an ideal world, palliative care would be initiated when an individual is diagnosed with a life-limiting illness,” Jennings says.

The value of a “good death” is frequently discussed in health care literature and public media. Value lies not only in how we live, the arguments go, but also in how we die. A good death can mean a week on the beach with loved ones — it can also mean minimizing time spent breathing with a ventilator. The scope of end-of-life care is broad, but value can be created in both situations and all in between.

“There are only two things we can guarantee in life: birth and death,” Jennings says. “The processes of being born and dying are dynamic and unique experiences that deserve equivalent amounts of respect, care, compassion and love.”

“Death has the potential to be a beautiful experience.”

Jennings chooses to attend patient funerals — she says they keep her humble.

“I get to share grief, see an individual’s beginning, middle and end, and see how many people were impacted by their life.”

The most crucial factors in a smooth transition between levels of care are time, information, and communication. Martin says she’s seen physicians give families three to seven days to process information in the smoother transitions she has participated in.

“Lack of time is the worst thing that can happen,” Martin says. “Resistant family members need to be able to ask questions. You need to take any and all questions. You need lots of people to interact with resistant family members and provide consistent information over those days.”

When a transition is abrupt, key players feel they are letting their loved ones down. Family meetings, multiple conversations with care providers, and openness to questions are all necessary.

“(Relatives) feel they are letting their loved one die … They need lots of information about the pathophysiology of what is going on,” Martin says.

Second-year nursing student Olivia Roth says she most likely will attend the funerals of her patients.

“Attending funerals will allow me to grieve, and make the process feel full circle,” says Roth.

Roth had an “eye-opening” experience caring for a palliative patient in her first year.

“It really transformed the way I thought about nursing … It was hard for me to understand that switching from curative to comfort measures would allow her to die with dignity,”Roth says.

Palliative care can also be provided in final moments when an individual is dying suddenly, or after a short period of illness.

When a patient dies suddenly, or without a period of anticipation by the family, there are greater feelings of loss than when a death is foreseen. Family members and other loved ones experience increased stress and higher rates of morbidity in the two years following a sudden death.

Loved ones sometimes turn to requests for potentially inappropriate treatment. Potentially inappropriate treatments are those that may have a small chance of treating the patients, but ethical considerations justify not providing the treatment. Some examples of potentially inappropriate treatment could be extended intubation, or life support beyond a reasonable timeframe.

Responding to requests for potentially inappropriate treatment can create moral, ethical, and legal dilemmas for health care professionals. Potentially inappropriate treatment can include ICU stays when prognosis is poor. Intensive care unit stays are costly in terms of dollars as well as discomfort, and can cause potentially traumatic experiences. Forced intubation, intravenous and arterial lines, time spent breathing on a ventilator, and decreased ability to communicate all add to the dramatically uncomfortable experience of an ICU stay.

Finances are also considered. Health care professionals never hope to have a conversation regarding the ethical and financial benefit of keeping somebody’s loved one on life support, but public dollars are sometimes a factor to be considered in medical decision making.

“It’s important to consider resources,” Martin says of one of the hardest conversations professionals and families face. “Access to intensive care beds, nursing care, ventilators, medications … It’s all very expensive.”

Many health authorities have developed policies and timelines to facilitate transitions from curative to palliative care, and the denial of requests for potentially inappropriate care. One significant aspect of the grief experience can be anger towards professionals, but evidenced-based, health authority-wide timelines can lessen feelings of anger towards and abandonment by the health care team.

Along with the families of patients, health care professionals can also  walk away from end-of-life experiences with pain and grief.

“It’s exhausting, both emotionally and physically,” Martin says. “But when (the transition) goes well, it’s one of the most satisfying experiences you can have. You feel like you’ve made a difference.”

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How a death doula can help patients and families in end-of-life transitions

By Debra Kaszubski

While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.
While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.

Doulas have typically assisted women during childbirth, or to support the family after the baby is born. But recently some doulas have shifted their focus to helping dying patients and their families.

Merilynne Rush and Patty Brennan, alternative health professionals, will offer Michigan’s first end-of-life doula training Nov. 18-20 in Ann Arbor. The sessions are geared for family members and friends of the dying, hospice and palliative care workers, midwives and doulas, clergy, therapists, life coaches, and anyone interested in preparing for their own death. It is not recommended for the recently bereaved.

While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.

Death doulas typically have experienced loss and want to encourage conversations and decision making about dying so patients and families can make their last days and the bereavement process more meaningful.

Each doula’s services are tailored to the specific needs of each patient and his or her family. They can include helping to create a death plan and caring for patients whether in a hospital or at home. Death doulas provide spiritual, emotional and psychological care to patients and their families, and can help plan home vigils and funerals.

Fees for their services also vary widely; some charge per hour, others offer packages for specific services, and some work on a volunteer basis or waive their fees for families who can’t afford their services.

“As more and more of us live longer and face chronic and life-limiting illness, the period of dying has extended from a few days or weeks to months or years,” Rush said. “Medical care focuses solely on cure and treatment. Patients often feel adrift among medical choices while grasping for ways to live with illness in full awareness that death will come. Life choices include acceptance, growth and sharing gifts of love and preparation. There is much meaning to be found during the dying year that is profound and life affirming.”

Deanna Cochran, a former hospice nurse from Austin, Texas, became an end-of-life doula after her mother’s death. She now works with patients who call on her to help them write advanced directives, plan funerals and prepare their family for their passing.

Cochran notes that death is a topic many people continue to feel uncomfortable addressing with their loved ones. Doulas can break the ice and serve as an impartial third party who facilitates conversations about end-of-life wishes.

“I started my private practice to help other families have the same end-of life experience that my mom had,” Cochran said. “My mom didn’t want to die in a hospital. She got to stay in her home with her family and dog and to remain comfortable, despite having an aggressive cancer.”

During the training sessions in Ann Arbor, participants will attend several workshops: assessing the needs of the dying, what is “good death,” how to hold a vigil, hands-on comfort measures, and working with the hospice and palliative care team, as well as doula practice considerations. Day three covers how to have a home funeral, a normal extension of hospice care which brings healing and comfort to friends and family through hands-on involvement in care of the body after death.

The event takes place at the Center for the Childbearing Year, 722 Brooks St. in Ann Arbor. For information and to register, visit center4cby.com.

Complete Article HERE!