What Happens to Patients After Taking End of Life Drug

Julie McFadden, a hospice nurse in California. McFadden has spoken publicly about end of life care as she tries to educate people about how death with dignity takes place.

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Many people might not like talking about end-of-life care or death until they’re faced with it themselves, but this hospice nurse wants to remove the taboo from the topic and educate people instead.

As an intensive care unit (ICU) nurse for over a decade, Julie McFadden, 40, focused on keeping patients alive, but when she made the switch to hospice care eight years ago, her attention turned towards making people feel comfortable as they neared the end.

McFadden, from California, regularly talks about the realities of hospice care, and what happens when a patient opts for medical aid while dying, on social media. She told Newsweek: “My main point is to make everyone a little less afraid of death. I want to change the way we look at death and dying.”

Medical aid in dying (also referred to as death with dignity, physician-assisted death, and aid in dying) is the prescribing of life-ending medication to terminally ill adults with less than six months to live, who are mentally and physically capable of ingesting the medication independently.

At present, only 10 states and the District of Columbia permit this process, but there is growing support elsewhere. A survey of over 1,000 people in 2023 by Susquehanna Polling and Research concluded that 79 percent of people with a disability agree that medical aid in dying should be legal for terminally ill adults who wish to die peacefully.

States where it’s permitted include Colorado, California, Washington, Hawaii, Maine, Montana, Oregon, and Vermont. Legislation is also being considered in Massachusetts, New York and Pennsylvania.

How the End of Life Drug Is Administered

As a hospice nurse in California, where a bill was passed to permit death with dignity in 2015, and became effective from June 2016, McFadden has assisted many patients who wanted to die on their terms.

She believes that there is real beauty in someone being able to have full autonomy over their death and choosing when they go, but she knows it’s a polarizing issue.

“People have to remember that not everyone has the same beliefs and I think it’s a beautiful thing that someone gets to have control over,” McFadden told Newsweek. “It’s powerful to witness someone be so alert, say goodbye to their loved ones, have their loved ones watch them take this drink and then die, but still be willing to be there to support them.

“I think most people in the U.S. have no idea that this law even exists, and even when I give very descriptive explanations of what the law is, what it means, what the criteria is, there’s still people who think I’m just overdosing patients with morphine.”

In order to acquire the medication, an individual’s request must be approved by two doctors, they have to undergo a psychological evaluation to ensure they aren’t suicidal, and doctors have to confirm that the person is capable of making their own decisions. Patients with certain conditions do not qualify, including those with dementia.

If approved, the person must take the medication themselves, and they can have family, friends, and hospice staff present if they wish.

Since June 2016, in California 3,766 death with dignity prescriptions have been written, and 2,422 deaths registered. To protect the confidentiality of any individual who makes this decision, death certificates usually note an underlying illness as the cause of death.

McFadden continued: “There are a few drugs mixed in, it’s taken all at once and the initial drugs kick in very quickly, within three to seven minutes. This person who ingested this drug will fall asleep or basically go unconscious. I say fall asleep just so people can picture what it looks like, but they’re unconscious.

“Then, the body is digesting and taking in the rest of the drugs that are also in that mixture, which will eventually stop the heart. It’s a general sedative and then they take two different cardiac drugs to stop the heart.

“They have a change in skin color and changes to their breathing, in what we call the actively dying phase, which is the last phase of life.”

Hospice nurse Julie McFadden
Julie McFadden pictured, a hospice nurse in California. McFadden spent several years as an ICU nurse before going into hospice care in 2015.

People Have A Lot of Misconceptions

Regardless of whether you’re in a state that permits physician-assisted death or not, dying isn’t regularly talked about in a positive way.

One of the reasons why McFadden wants to have a more open conversation about it is to remove any prior misconceptions that people might have and educate them on what really happens.

“I have not seen anyone show signs of pain, but people are always concerned about that,” she said. “In general, if you’ve done this for a long time, if you’ve been in the healthcare system and work as a nurse or by someone’s bedside, you know what a body in pain looks like, it’s very obvious.

“A person who is unconscious and can’t verbally say they’re in pain will show you with their body language. Most people that have taken this medication who I have witnessed did not show those signs. I witness it day in, day out, but it’s pretty miraculous to see how our bodies, without even trying, know how to die. They’re built to do it.

“People get really angry and think I’m trying to hurt people. I always want to educate people around this topic, because the main thing people don’t want is for their loved ones to suffer at the end of life.”

As an ICU nurse formerly, McFadden explained to Newsweek that she was trained to keep patients alive, and they “didn’t have conversations about death early enough.” Despite patients being near death, they were kept alive through machinery for weeks or months, before ultimately dying on the ward.

Many of the country’s biggest medical associations are conflicted by death with dignity, with some choosing to endorse it, and others speaking against it. The American Public Health Association, and the American Medical Student Association are among the bodies to endorse it, but it has been publicly opposed by the American Medical Association and the American College of Physicians.

Julie McFadden spoke about end of life
Hospice nurse Julie McFadden, 40, from California, has been discussing death with dignity. Death with dignity is permitted in California, so McFadden has shared her experiences of helping patients go through that process.

Talking Openly About Death

In 2021, McFadden set up her TikTok account (@hospicenursejulie) to speak openly with her followers about death and answer any questions people might have. Many of her videos have gone viral with millions of views, and while she does get a lot of positive feedback, there is also plenty of negativity.

There are people who wholly disagree with her advocacy for death with dignity as they claim she is playing God, or that she’s promoting suicide. But by having an open conversation, the 40-year-old hopes to make people less fearful of dying.

Speaking to Newsweek, she said: “Most of my audience is general public, that’s why I don’t talk like I’m speaking to other nurses or physicians. I talk like I’m speaking to my families who I talk to in everyday life. I think death just isn’t talked about, or it’s not explained well.

“I’m seeing so many times that people who are willing to have difficult conversations about their own death, who are willing to say they’re afraid to die, those patients who were willing to ask me those things and talk to me about death, had a much more peaceful death.”

Complete Article HERE!

Care of the Body After Death

By Glen R. Horst MDiv, DMin, BA

Family members or close friends may choose to be involved in washing and dressing the body after death has occurred. Caring for a body is not easy and can stir up strong emotions. See Moments After a Death. Many people turn to health care providers and funeral directors for help. They find comfort and assurance in entrusting the body to those who provide professional services. The deceased may have left instructions for their after-death care to be handled by the health care team and chosen funeral home. Other people practice religions or belong to communities that view care of the body as a family responsibility. Their faith community, elders or neighbours provide guidance and support for hands-on care of the body. For some, this is a way of honouring the person – a final act of kindness to him or her.

This article outlines the steps involved in the care of the body after death.

In advance of the death

Talk to the health care team in advance about family or friend involvement in after-death care. You may also want to talk to the health care team about the supplies and assistance that will be required.
Washing, dressing and positioning the body

Washing and dressing the body is an act of intimacy and sign of respect. Those who were most involved in the person’s physical care may feel the most comfortable in doing this. Continued respect for the person’s modesty is essential.

Regardless of whether the person died at home or in hospital, hospice or nursing home, washing and positioning the body is best done where death occurs before stiffening of the body (rigor mortis) sets in. Rigor mortis happens within two to seven hours after death. Regardless of the location of care, you may need four to six people to help in gently moving and turning the body.

At home, you can wash the body in a regular bed. However, a hospital bed or narrow table will make the task easier. Since the body may release fluids or waste after death, place absorbent pads or towels under it. It is important to take precautions to protect yourself from contact with the person’s blood and body fluids. While you are moving, repositioning and washing the body, wear disposable gloves and wash your hands thoroughly after care.

Washing the person’s body after death is much like giving the person a bath during his or her illness.

1. Wash the person’s face, gently closing the eyes before beginning, using the soft pad of your fingertip. If you close them and hold them closed for a few minutes following death, they may stay closed on their own. If they do not, close again and place a soft smooth cloth over them. Then place a small soft weight to keep the eyes in position. To make a weight, fill a small plastic bag with dry uncooked rice, lentils, small beans or seeds.

After you have washed the face, close the mouth before the body starts to stiffen. If the mouth will not stay shut, place a rolled-up towel or washcloth under the chin. If this does not provide enough support to keep the mouth closed, use a light-weight, smooth fabric scarf. Place the middle of the scarf at the top of the head, wrapping each end around the side of the face, under the chin and up to the top of the head where it can be gently tied. These supports will become unnecessary in a few hours and can be removed.

2. Wash the hair unless it has been washed recently. For a man, you might shave his face if that would be his normal practice. You can find step-by-step instructions in the video Personal Hygiene – Caring for hair.

3. Clean the teeth and mouth. Do not remove dentures because you may have difficulty replacing them as the body stiffens.

4. Clean the body using a facecloth with water and a small amount of soap. Begin with the arms and legs and then move to the front and back of the trunk. You may need someone to help you roll the person to each side to wash the back. If you wish, you can add fragrant oil or flower petals to your rinse water. Dry the part of the body you are working on before moving to another. Some families or cultures may also choose to apply a special lotion, oil or fragrance to the person’s skin.

5. Dress or cover the body according to personal wishes or cultural practices. A shirt or a dress can be cut up the middle of the back from the bottom to just below but not through the neckline or collar. Place the arms into the sleeves first and then slipping the neck opening over the head, tucking the sides under the body on each side.

6. Position the arms alongside his or her body and be sure the legs are straight. If the person is in a hospital bed with the head raised, lower the head of the bed to the flat position.

The Canadian Integrative Network for Death Education and Alternatives (CINDEA) has a video series on post-death care at home that includes videos on “Washing the Head, Face, and Mouth”, “Washing the Body”, “Dressing the Body”.

Next steps

If a funeral home is assisting with the funeral, cremation or burial, call to arrange for transport of the body to their facility. If the death has occurred in a hospital, hospice or long-term care facility, the staff will arrange for the body to be picked up by the funeral home of your choice. In hospital, once the family agrees, the body is moved to the morgue and kept there until transported to the funeral home.

If your family is planning a home funeral or burial, cover the body in light clothing so it will stay as cool as possible. A fan, air conditioning, dry ice or an open window in the room where you place the body will help to preserve it.

See also: Planning a Home Funeral

For more information about providing care when death is near or after a death, see Module 8 and Module 9 of the Caregiver Series.

For additional resources and tools to support you in your caregiving role visit CaregiversCAN.

Complete Article HERE!

She helps people cope with death.

— The Indiana Attorney General’s Office made her stop.

By Johnny Magdaleno

As one of Lauren Richwine’s clients lay in bed, his stepdaughter wrote a note and slid it into the shirt pocket over his motionless chest. Friends from the local music scene cried at his side as they prepared to carry the former bassist out of his home, permanently.

Cancer killed the young father. Instead of being rushed away to prepare for burial, his family kept him at home for a day. He rested in a sunroom, Richwine said, where the people in his life grieved and his children climbed in and out of bed with his body.

Richwine runs Death Done Differently — a Fort Wayne company specializing in “community-led death care.” She does end-of-life planning and informs people about alternatives to conventional funerals.

“Some people (say), ‘Isn’t it going to be traumatizing to the children, or couldn’t it be traumatic to see or be with someone after they’ve died?’” Richwine told IndyStar. “And I think, in my experience, it’s the opposite. It’s traumatic when we remove them too fast because we haven’t had time for this to really sink in.”

But as of this week, her work is on hold. On Wednesday she launched a new lawsuit against Indiana after the state shut her business down.

Attorney general’s office says she needs funeral director license

Death Done Differently caught the attention of the Indiana Attorney General’s Office in 2021. Someone filed a complaint against Richwine with the office. The complaint didn’t allege she harmed or deceived anyone, according to a copy reviewed by IndyStar, but said she “may require a license from the state to provide funeral services.” It doesn’t say who complained.

After giving Richwine the chance to reply, the office asked the State Board of Funeral and Cemetery Service for a cease-and-desist order.

Death Done Differently “offers several services that constitute the practice of funeral service,” the office said. It points to services like discussing body disposition, helping with legal paperwork and “readings, music, conversation, healing touch, or general companionship with the dying individual.”

State law says the practice of funeral service includes “the counseling of individuals concerning methods and alternatives for the final disposition of human remains.”

The board agreed. It issued a cease-and-desist order against Richwine on Aug. 21.

Richwine says her work is protected by the First Amendment

Her lawsuit claims Indiana is restricting her free speech because her work is speaking with and educating clients. Richwine’s attorneys want a judge in federal Northern District of Indiana court to issue an injunction that would stop the state from denying her “ability to speak with adults regarding death care.”

“There are a lot of people who currently talk about funeral options, funeral care that are not funeral directors,” Richwine said.

She gave the example of pastors. Some have “healthy relationships” with funeral homes and can be a link between congregants and funeral providers.

“Are they going to now be not allowed? Where does this end if they don’t want you talking about any of the laws and any of the funeral code at all?”

IndyStar has asked the attorney general’s office for its response to the lawsuit.

Former client: ‘She was just there to facilitate’

Andrea Schwartz’s family called Richwine hours after her daughter, Nova, was stillborn. It happened five years ago.

She told IndyStar Richwine played a different role than the funeral home her family worked with.

“Our experience was she was just there to facilitate, give us information, show us what our choices were, support us through it,” Schwartz said. “But then as far as the actual funeral, all the procedures and everything were done through a funeral home with their own funeral director.”

Richwine gave “warm support and comfort.” It was like night and day compared with Schwartz’s past experiences with elderly deaths in the family.

“It was never a positive experience” working with corporate funeral homes, she said. It was cold and impersonal, “like you’re just a number to them.”

“Kind of feeling like you were at a car sales lot the whole time,” Schwartz said.

Lawsuit says traditional funerals ‘medicalize’ death

Richwine’s lawsuit says she advises people about options other than the “historically recent innovation” of “embalming the body, holding a ceremony in a funeral parlor, and cremation or burying in an expensive casket.”

That process “medicalizes death,” the suit claims. It points to home funerals as one alternative, adding that bodies don’t present health risks to those in their vicinity for at least three days “in ordinary circumstances.”

“There’s a weird dynamic at work, where we have been normalized to relate to someone when they die as … not really belonging to us anymore,” Richwine said. “That’s part of what my work comes out of, this very strong belief that they still belong to those loved ones and the relational ties that were created, those deserve to be honored and respected.”

Complete Article HERE!

I am dying at age 49.

— Here’s why I have no regrets.

Author Amy Ettinger, center, with her husband Dan White and their daughter Julianna White at Disneyland in March.

by Amy Ettinger

Last month, I found out I have Stage 4 uterine leiomyosarcoma, a rare and aggressive cancer. Doctors say I may have just a few months to live. Treatment could buy me a little extra time, but not much. My disease is advanced and incurable. My prognosis has left me shocked, sad, angry and confused. I wake up some mornings raging at the universe, feeling betrayed by my own body, counting the years and the milestones I expected to enjoy with my family.

I am leaving behind a husband and 14-year-old daughter I adore, and a writing and teaching career I’ve worked so hard to build. I’ve been doing a lot of thinking about my life, and in addition to the horror, a surprising feeling has taken hold: I am dying at age 49 without any regrets about the way I’ve lived my life.

I learned that lasting love is about finding someone who will show up for you

In my teen years, I fell hard for a boy who broke my heart, not just once, but half a dozen times. It was an obsessive first crush, the kind that made me stop eating and sleeping. He broke up with me and we got back together many times in high school.

The feeling was addictive, although it made me miserable. Even after I graduated, I could not get him out of my head. His story ended tragically — he took his own life at age 21. His death was heartbreaking, but my fraught relationship with him, and the traumatic aftermath, taught me what I ultimately wanted in love — safety, support, fun and adventure.

I needed a partner who would help me feel good about myself, someone steady, reliable, and free from all that romantic drama.

A few years later, I met my future husband, who was insecure and grappling with his own worries. Dan was smart, bookish, funny and kind. His love for me was constant and never in question. He was a writer, but instead of being competitive with me, he supported my career. Dan and I have been together 25 years, never having broken up or even separated, even for a day.

I pursued my dream career with passion

“No one can make a career out of writing.” It was a statement I heard from almost everyone I knew, from teachers to parents to concerned friends. I was told I would face a life of rejection and begging for late paychecks.

But I knew I could not survive waking up each day to the morning commute and heading to a 9-to-5 office job under fluorescent lights. I like to be in charge of my own life and schedule.

When I wanted to write a reported history about ice cream in America, some people laughed.

“I can see it as a magazine story, not as a book,” one agent wrote me.

And yet I went on to land a contract with Penguin Random House to travel the country, eating ice cream, gathering research, interviewing Jerry from Ben & Jerry’s, and riding around on the back of an ice cream truck through the streets of Bensonhurst, N.Y. The book contract was lucrative, and the publication of “Sweet Spot: An Ice Cream Binge Through Americaopened up opportunities I never expected, like being on NPR and teaching creative nonfiction writing.

>In the last few years, I have been able to mentor and coach dozens of promising writers. In return, these students, with their sincerity and soaring ambitions, helped revitalize my own writing, reminding me why I went into this business in the first place.

I have never had a bucket list; instead I said ‘yes’ to life

I’ve always tried to say yes to the voice that tells me I should go out and do something now, even when that decision seems wildly impractical. A few years ago, with very little planning, my family and I got in a car and drove 600 miles to a goat farm in central Oregon, where we camped out for four days to watch a solar eclipse. I once jetted off to Germany on two days’ notice, spending a week exploring Dresden and hiking through the Black Forest.

“Money always comes back, but if you miss out on an experience, the opportunity may never come back.” This has been my mantra since I met Dan. Even when our bank account was low on funds, we decided to move to New York City to pursue our writing dreams. It was ridiculously hard at first, but it worked out because we gave ourselves no other choice.

I’m a good saver but things like retirement accounts were never important to me. When given a choice between taking a family trip to Kauai or squirreling money into a 401(k), I always chose to head for the islands.

I found people in my life who can accept me as I am

I don’t try to hide who I am or apologize for it. I am a bit of a hermit. I am sure I have hurt people’s feelings with my behavior from time to time by ducking out of parties early or choosing not to go to Happy Hour. I have spent very little time worrying about it. I think it’s more important to find people who get me and accept me than want to change me. I have done my best to avoid people who come at me with unreasonable expectations. And because I don’t have to spend any time covering up my real self, my friendships are genuine. Since my diagnosis, I’ve had a chance to tell my friends how much I love them. They’ve told me that, too, and I deeply feel it.

I live where I want even though the numbers never add up

I love spending time in the redwoods and by the ocean. Just a few months ago, I was walking four miles a day along the sweeping ocean coastline at West Cliff Drive where I could see surfers and otters frolicking, and humpback whales lunge-feeding just off the shoreline. This became my everyday routine.

My favorite spots are within a 10-minute drive of my house, and most are still accessible even as my energy continues to drop off as the cancer spreads through my body.

The flip side of this dream life is the cost. My family and I live in one of the most unaffordable places in America.

Dan and I have talked dozens of times about uprooting, but my friends and our writing community are in Santa Cruz, and my daughter loves her friends and her school, so my husband and I have chosen to stay. My family will never own a house — at least not in my lifetime — but at least I am dying around people who love me and are bringing me meals when I need them. These are people who are willing to show up for me no matter what. And I know they will show up for my husband and daughter, even after I am gone.

The end of my life is coming much too soon, and my diagnosis can at times feel too difficult to bear. But I’ve learned that life is all about a series of moments, and I plan to spend as much remaining time as I can savoring each one, surrounded by the beauty of nature and my family and friends. Thankfully, this is the way I’ve always tried to live my life.

Complete Article HERE!

Terminal illness

— Navigating the struggles of acceptance

By Linda Thomas, RN

Reality knocked me for a loop one evening when my father-in-law called from his home in another state and asked for help. This kind of request was very uncharacteristic for him. We responded immediately and drove to his home. After much conversation and many questions from both sides, we eventually came to the hard truth. His cancer had progressed and, to my mind, was most likely terminal. I dug in and started contacting his doctors, trying to sort out his health issues and prognosis. This took most of a day. I came to realize he was seeing nine physicians! He was in a desperate state of denial. The oncologist repeated that he had been very open and clear with my father-in-law about the cancer and its spread.

My father-in-law had been readmitted to the hospital with a very determined but misguided surgeon. My father-in-law thought the surgery proposed by the surgeon would be a cure. It wouldn’t be, and I had the unenviable task of discussing end-of-life matters with the patient, something the surgeon should have been upfront about.

Hospice came to the hospital to discuss the care they could offer him at his home. He elected to enter into hospice, and we took him home. At this point, he was feeling fairly well, and he had a glorious two weeks with friends and family coming for visits from many miles away. Meanwhile, I quickly discovered I was in unfamiliar territory when it came to his care. It was increasingly difficult for me to care for someone I loved and had a close familial bond with. The amounts of medication he was allowed, the hard decisions I had to make… all were uncomfortably entwined with the closeness of being family. He asked for teaching regarding his health and prognosis, and we spent hours discussing end-of-life matters and the decisions to be made. Even though family was in touch, they were in their stages of denial. I became the liaison for the family’s questions, as well.

Uncharacteristically for me, I was struck with uncertainty, processing my grief while maintaining my professional duties. I relied heavily on the hospice nurses as they made their daily visits. The type of care I gave him, the large doses of medications that kept him comfortable… all were different when compared to my decades of working to save lives and titrating medications for patients who would, with the care given, most likely live to go home and resume their lives. I found myself relying on the hospice nurse, asking questions like, “Are you sure it’s ok to give him that large a dose of painkillers?” She worked with me, explaining how different this type of nursing was compared to the care given to save the lives of my usual hospitalized post-surgical, cardiac, neuro, psyche, burn, chronic respiratory, and emergency patients.

There were different, more intense emotions involved in caring for this terminally ill, beloved family member. I second-guessed myself in areas where I normally was quite confident. The advice that most helped guide me through the nights of caring for him was given to me by the hospice nurse. She repeated to me several times, “This is different from the nursing you are used to. You medicate this patient for his comfort… whatever it takes. You cannot overdose him. I repeat, you cannot overdose him.” So I learned a new skill. I learned to titrate medication for his comfort, to give him what he needed, without second-guessing myself. I kept him comfortable but functional.

And one night, he collapsed as he left the bathroom. He had no perceptible heartbeat. He had no perceptible breathing. After 15 minutes, he sat up and started talking! It blew my mind. Once he was settled back in bed, I teased him about him having left us to visit his favorite brother and his much-loved mother, both deceased. He suddenly looked at me with complete seriousness and said, “How did you know where I was?” He was thoughtful for the next few hours, then quietly said, “I’m ready. I’m ready to go, and I’m not afraid. I’ve done everything I needed to.” Three days later, he left us. That time there was no resurrection.

Complete Article HERE!

Planning to die at home?

— Here are 5 things to consider first.

Many of us say that if we have to die, we’d like to die comfortably in our home. Luckily, hospice—a Medicare-covered model of gentle, holistic end-of-life care—is ready to help with that goal.

Maybe.

by Laura Kelly

At age 78, my divorced father was diagnosed with Stage 4 colon cancer. He later admitted that he’d skipped getting any colonoscopies. He was a savvy healthcare researcher and, via drug trials, controlled the spread of his cancer for four long years. Then came the day his doctor said, “There are no more treatments left, Larry. Call your kids and sign up for hospice. Today.”

If you’re hazy about what hospice is, as my family was, check out Medicare’s hospice page that details the conditions that qualify you for hospice care and what costs Medicare will cover. You might also check out a 2023 New York Times article that sheds light on how hospice functions today. The industry has traveled far from its grassroots, volunteer origins of 40 years ago.

By the time I was flying from New York to Michigan to “help out,” my busy brother David had made the executive decision to move my father from his cluttered condo to David’s larger family home across town. My brother’s wife, 9-year-old daughter and three large dogs were no doubt a bit flummoxed when David deposited my hospice-unready father into the ground-floor master bedroom. But my father and everyone else were united in wanting the proverbial “good death” in the comfort of a home, even if it wasn’t his.

What happened during that home hospice experience surprised me. After it was over, I compared notes with friends. It seems that what my family went through might not be typical. Still, it could be a portent of what’s to come as the baby boomer bulge meets the realities of understaffed hospice care. Here are five takeaways if you’re ever considering home hospice for a loved one—or yourself.

1. Research hospice options before you need them

As my father and family found out, the very end is much too late to think about hospice—both for taking advantage of hospice’s full psychosocial benefits and for finding out what you’re getting into.

The hospice provider, which had been suggested to my father by his doctor’s office, turned out to be severely overstretched. We had only four short visits from a hospice nurse—a different person each time—during the 11 fraught days of my father’s end-of-life passage. It was also impossible to get the hospice doctor on the phone to answer our ongoing questions. Even so, we could never find the time to research and switch to another organization.

Since events can overtake you at the end of life, spend an hour today learning which hospice providers operate in your area. AARP keeps an excellent updated page with facts about hospice, including questions to ask when you interview organizations. Your future self will thank you.

2. Know what equipment and services to ask for

Beyond the electric hospital bed, rolling bedside table and plastic commode that the hospice group delivered, my brother’s home was not equipped for a dying person. Side note: At the intake meeting where we met with hospice nurse No. 1 and a social worker, we all agreed that the bed was much too short for my 6’4″ father. He requested a replacement, but one never arrived. We should have kept asking.

We quickly found ourselves making daily runs to a nearby Target for more towels, more large and small pillows for propping up, more pajamas, cooling patches, ice packs, a small table fan that my father could angle, sheets, blankets, sippy cups and dry-mouth swabs, plus an intercom because my father’s voice weakened too much to call for us in another room. My credit card got a workout.

3. Be prepared to hire help

As much as we tried to make my father comfortable, it seemed impossible. He was plagued by restlessness and couldn’t sleep or be convinced to stay in bed. Someone had to be near him around the clock to prevent a fall in his weakened state.

After six sleepless nights, we called the hospice phone line yet again with questions about the situation, and a nurse on the line finally filled us in on “terminal agitation,” a not-uncommon occurrence at end of life for cancer patients, even though no one in our family had heard of it. She told us that this kind of metabolic restlessness was worse than pain because it could not be soothed by painkillers. “Call us again if you need to,” she wrapped up.

By then, we realized that our home hospice team was mostly voices on the phone, not the on-site caretakers we’d expected. A concerned long-distance relative emailed me: “Get yourself some nighttime help so you can sleep.”

I had no idea how to find good health aides at short notice, but it turned out that “good” wasn’t the issue. We just needed someone to sit near my sleepless father, so we caretakers could get some rest. I also needed time to coordinate events outside of hospice, such as lining up a funeral home to call when my father died. In the end, I pretty much handed over my credit card to three different aide services to help us patch together 24/7 coverage until the end.

Will you need expensive additional aides for home hospice? Maybe, so be prepared by getting the names of aide services and interviewing them at the beginning of the hospice process, so they’re just a phone call away if needed.

4. Someone needs to be in charge

Continuity of care was a big problem for us and my father. There was a revolving stream of new hospice personnel and eight different aides, along with a churn of visits from nearby relatives and phone calls from folks farther afield. Meanwhile, every day brought changes and challenges as the end of life approached.

It took me far too long to realize that neither my father nor the home hospice team were running the show; I was. In unfortunate timing, during these hospice days, my brother had been pulled away to manage an ongoing crisis at his company. Still, every night, David remained on call to help me or an aide. He was the only one who could support my tall father as he restlessly moved from bed to nearby chair to commode.

Needless to say, my brother was exhausted. After another of these nights, I emailed my two sisters what came to be known as “the bossy note,” telling them exactly what was needed from them beyond the occasional visits bearing baked goods. It was all-hands-on-deck time.

I suggest that upon hospice enrollment or before, everyone should agree on a point person. This coordinator would have the overview of the home hospice situation, be given the latitude to set the ground rules and make decisions, and be allowed to delegate whatever to whomever, as needed.

5. Hospice at home may mean a nonprofessional will be in charge of medications

One of the hallmarks of hospice is the comfort care provided. On the first day, as I followed the intake hospice nurse on her way out the door with my list of anxious questions, she stopped me by handing over what she called a “comfort box.”

I pried open the white cardboard box and saw a confusing array of vials, syringes and suppositories. I thrust the box back toward her. “This is all for you to use, right?”

“No, they’re for you,” she said. “If your father needs them, you can call us. Put the box in the refrigerator where you can find it fast.” Then she left.

I immediately regretted that I didn’t ask her to go over each and every medication and how to use it, recording her explanation using my cellphone.

Later on, when I hired the aide services to help us through the final days and nights, I found out the aides weren’t allowed by their companies to prepare the needed antianxiety and sedative medications, and they could only give them to the patient when directed by someone in charge, meaning me. If I wasn’t awake to direct them, my father wouldn’t get his comfort meds.

As my shaking hands prepared morphine syringes and crushed Ativan pills in the middle of the night, I thought, “I would never expect or want someone like me to do this for me.”

My advice: When you’re doing those early interviews with prospective home hospice providers, ask who will actually dispense the medications. Maybe you’ll find out the home hospice nurses will be there to do it. But in our case, they weren’t.

My father died on Oct. 25, 2015, after his 11 days of home hospice care.

Was it the good death my dad had hoped for? I’ve never shared this with my siblings, but I don’t entirely think it was. My father had always prided himself on being the problem solver, not the problem maker. While we tried to hide our distress, he couldn’t help but notice how unprepared his kids were to supervise this 24/7 medical undertaking.

One late night, as I lay awake on the king bed beside my restless father in his little hospital bed, he told me he was sorry about “all the trouble I’m causing,” as he put it.

“I didn’t imagine it would go like this,” he said quietly. “No help. No sleep. Not knowing what’s coming next. Thank you for everything you’re doing.”

I reached over and touched his hand. “Dad, I am so grateful to be here helping you through this after all you’ve done for us. Please don’t apologize. You’re no trouble at all.”

Later, I heard friends’ stories of their supported and peaceful experiences in dedicated hospice facilities. There, they could quietly share smiles and good memories, listen to music, even be served meals. A facility can perhaps more easily arrange quality-of-life options for the patient, such as expert bathing and therapeutic massages with oils. Most important, a facility would presumably be staffed with professionals who could administer the proper palliative medication. A place that’s designed and intended for end-of-life care clearly has some advantages.

If, however, you’re with the majority who would prefer using hospice in a familiar home setting, look into what’s entailed well ahead of time. Ensure that family or friends are willing and able to coordinate all the activities and decisions. Have a credit card ready for all the purchases and extra help you may need. And don’t make hopeful assumptions, as I did. Be proactive and ask the necessary questions, so you or your loved one gets the quality end-of-life care all of us deserve.

Complete Article HERE!

How to take care of trans patients in hospice

By Dallas Ducar and Cathy Campbell

In the United States, more than 1.6 million people identify as transgender. Of these, more than one-fifth are over the age of 65, the vast majority of whom transitioned in the latter part of their lives. Transgender Americans are both living and dying among us: precisely why we health care providers must improve our approaches to ensuring dignified and respectful care for transgender elders, especially at the end of life.

What trans people hope for in their final moments of life — whether that is months, days, or hours — is no different than what anyone else wishes for. Trans people don’t want to be in pain. Trans people want their decisions to be honored. Trans people want a comfortable environment, to be treated with respect and dignity, and to be in the company of the loved ones they choose. We all want to live our last days authentically.

However, trans patients’ end-of-life journey poses unique challenges, many of which are rooted in their fear of being judged, intentionally or unintentionally humiliated, and excluded from critical care services, including pain relief — things that doctors, nurses, and chaplains sometimes unwittingly contribute to. And while mistreatment of transgender elders in hospice care — whether at home or elsewhere — can take many forms, it almost always stems from a lack of understanding or knowledge about transgender identity and needs, understanding what topics are within- and off-limits, and, in the worst cases, outright bias and discrimination.

We are both nurses. One of us, Dallas, has seen the impact of poor gender-affirming care firsthand and has co-founded a startup nonprofit, Transhealth, to provide, teach, research, and advocate for good gender-affirming care. The other, Cathy, has more than 30 years of experience working in hospice. We both understand that gender-affirming care is simply good health care, and too many are deprived of it, especially when unable to advocate for themselves.

When health care providers mistake patients’ gender or call them by their assigned rather than chosen name, it can be deeply distressing and disrespectful. Choosing a new name is one of the first, most profound public declarations a trans person goes through when first transitioning. Likewise, intentionally keeping one’s birth name amid a gender transition can be a sacred declaration, too. As such, it’s critical that clinicians get patients’ names right from the first meeting and use pronouns that match their patients’ chosen gender identities. Starting with their first interactions, health care workers should introduce their own name and pronouns, leveling the power imbalance, and then ask the individual for their name and pronouns. This is the first step in establishing trust.

Because trans patients’ unique health needs are often misunderstood, accommodations can be lacking, especially within the more specialized hospice setting. What does personalized care look like? It’s when clinicians take the time to affirm and support patients’ daily care rituals that match their gender identities. So a bedridden trans man who hasn’t had “top surgery” might need help binding his chest. A trans woman may need assistance shaving or doing her hair or makeup. Providers should also be supportive of patients’ continued use of hormone therapy, even if it interacts with other medications or diagnoses. One’s social embodiment remains vital even if at the end of life.

Because trans patients sometimes arrive for care in hospice facilities in a stage of advanced need, clinicians caring for trans communities must be extra vigilant as they manage symptoms and offer support and respect. Encountering health care workers who are reticent to care can compound feelings of isolation, discrimination, exclusion, and lack of acceptance. Trans patients might also be held at a distance by fellow hospice patients and their family members. Given that, clinicians must go above and beyond with their trans patients, regularly checking in in all the usual ways (How’s your pain? What do you need? How are you feeling?) as well as ways more specific to their gender identity (Do you have what you need to support your gender identity and gender expression? How is your circle of support being included in your care? Is anything/anyone keeping you from feeling comfortable and like you belong?).

Education is a critical component of delivering gender-affirming hospice care, too. Whether health care systems require it or not, care providers at all levels must take trans-inclusive care courses and training, like the courses offered by GLMA and the Fenway Institute, to fully understand the issues trans patients face. Such learning reinforces behaviors and builds knowledge about what respectful, nonjudgmental, and supportive care looks, sounds, and feels like.

Beyond day-to-day care are social and economic considerations and how they’re affected by a patient’s gender identity. Care providers can ask gentle, open-ended questions to assess whether additional support or resources might be needed: Do you struggle paying for rent, food, utilities, or your medications? Are there any issues with violence at home? These basic questions apply to all individuals, but transgender people are at greater risk for food insecurity, housing insecurity, and safety concerns, so it’s even more important to address them as part of a plan of care.

Conversely, curious questions unrelated to trans patients’ palliative care and well-being are wholly inappropriate. Off-limits are questions like: What was your name before you transitioned? Have you had surgery? What do your family and friends say? Are you a man or a woman? It’s vital that clinicians be aware of the harm these questions can cause.

There are administrative considerations, too. Hospice and palliative care providers often discuss the benefit of advanced directives, which are legal documents that outline the passage of care decision-making responsibilities when the patient is unable. Because transgender patients are sometimes estranged from biological family, these conversations and documents have particular relevance, and health care workers should pursue patients’ wishes while they have the ability to choose who will decide for them at life’s end if not their relatives. Even if a complete legal document isn’t finalized, partial directives are better than no directives at all.

Finally, it’s critical that clinicians not assume that every trans patient’s life has been marked by suffering. Many, many trans men and women have had beautiful, affirmed, supported lives. Clinicians must not assume that all transgender patients are similar. Trans folks must be cared for as individuals first.

Trans elders are part of our communities, both in life and in death. Supporting the overall well-being of trans patients means acknowledging their humanity and affirming their identities as humans first. We, as health care providers and clinicians, must ensure our transgender elders live and die with their dignity intact and their authenticity respected. The quality of our care should reflect our shared humanity, undiminished by our differences.

Complete Article HERE!