‘I Couldn’t Let Her Be Alone’

– A Peaceful Death Amid the COVID Scourge

Patti Breed-Rabitoy had coped with lung and kidney disease for years but remained a vital, bubbly presence in the lives of her husband, Dan Rabitoy, and three grown children.

By JoNel Aleccia

As her mother lay dying in a Southern California hospital in early May, Elishia Breed was home in Oregon, 800 miles away, separated not only by the distance, but also by the cruelty of the coronavirus.

Because of the pandemic, it wasn’t safe to visit her mom, Patti Breed-Rabitoy, who had entered a hospital alone, days earlier, with a high fever and other symptoms that were confirmed to be caused by COVID-19.

Breed-Rabitoy, 69, had suffered from lung and kidney disease for years but remained a vital, bubbly presence in the lives of her husband, Dan Rabitoy, and three grown children. She was a longtime church deacon and youth leader in Reseda, California, a fan of garage sales, bingo games and antique dolls. Then came COVID-19, likely contracted in late April following one of her thrice-weekly dialysis sessions. Now she lay sedated and on a ventilator, her life ebbing, with no family by her side.

“I had seen these things on TV and I would pray for those people and say, ‘I can’t imagine what they’re going through,’” said Breed, 44. “And now I was living it.”

A single mom of two young sons, she was wrenched with guilt at not being with her mother. “You always picture you’re going to be right by your parent’s side,” she said.

Unlike many families of dying COVID patients, Breed and her family were able to find some comfort in her mother’s final hours because of the 3 Wishes Project, a UCLA Health end-of-life program repurposed to meet the demands of the coronavirus crisis. In the U.S., where more than 120,000 people have died of COVID, it’s part of a wider push for palliative care during the pandemic.

At 5 p.m. on May 10, Mother’s Day, before Breed-Rabitoy’s life support was removed, more than a dozen family members from multiple cities and states gathered on a Zoom call to say goodbye. John Denver’s “Rocky Mountain High,” one of her soft-rock ’70s favorites, played on speakers. Online, a chaplain prayed.

Breed-Rabitoy had been deeply sedated for more than a week, since a terrible night when she struggled to breathe and asked doctors to place her on the ventilator. Confusion abounded, Breed said. Could her mom still hear in that state? Two nights in a row, Breed asked nurses to prop a phone near her mom’s ear.

“I prayed with her. I sang her favorite songs. I read her the Bible,” she said.

Finally, a nurse gently explained that her mother was too sick to recover. If they removed the ventilator, it would be to allow her to die.

That’s when hospital staffers described the 3 Wishes program and asked whether the family had any personal requests for her last moments. They decided on the music and the family Zoom call. Dan Rabitoy requested that a nurse hold his wife’s hand as she died.

After it was over, family members received keychains stamped with her fingerprint and a copy of the electrocardiogram of the last beats of her heart.

“I’m grateful to have these keepsakes,” Breed said. “All these things have been healing.”

The project was developed in Canada but co-launched at UCLA Health in 2017 by Dr. Thanh Neville, an intensive care physician who serves as 3 Wishes’ medical director. It aims to make the end of life more dignified and personalized by fulfilling small requests for dying patients and their families in the ICU.

Before COVID-19, the program had granted nearly 1,600 wishes for more than 450 patients, nearly all in person. The deathbed scenarios have varied, from music and aromatherapy at the bedside to meeting a patient’s request for one last mai tai cocktail.

“We’ve done weddings and mariachi bands and opera singers and 20 to 30 family members who could come in and celebrate,” said Neville, 41. “And none of this is possible anymore.”

COVID-19 has “changed everything,” said Neville, a researcher who focuses on improving ICU care for the dying. Also a clinician, she spent weeks this spring tending to seriously ill COVID patients. Since March, her hospital system has seen more than two dozen COVID deaths.

In the beginning, visitors were strictly prohibited. Now, some may come — but many don’t.

“I would still say the majority of COVID patients die without families at their bedside,” Neville said. “There are a lot of reasons why they can’t come in. Some are sick or old or they have small kids. A lot of people don’t want to take that risk and bring it home.”

It has been hard to keep 3 Wishes going during a time when in-person memorials and celebrations are banned and infection control remains the primary focus. Neville even had to change the way the fingerprint keychains were made. Now, they’re treated with germicidal irradiation, the same method that lets health care workers reuse N95 masks.

The 3 Wishes Project is offered when death is imminent: Patients are enrolled after a decision has been made to withdraw life-sustaining technology or if the chance of death is greater than 95%. The program was created to help patients, caregivers and clinicians navigate the dying process in a less clinical, more humane way. Wishes needn’t be limited to three, and they can be articulated by patients, family members or hospital staffers.

The program is based on palliative care tenets that focus on the humanity of the patient amid intensive medical care, said Dr. Rodney Tucker, president of the American Academy of Hospice and Palliative Medicine. Seemingly small acts that honor an individual life help counter the efficiency-driven environment of the ICU, which can be dehumanizing. They’re at the core of care that has been shown to ease both angst for the dying and grief for those who loved them. “It helps the family that’s left behind cope more successfully with the loss,” he said.

Such efforts also remind providers of the humanity of their practice, which can help them cope with the stress of witnessing death daily, especially during something as extraordinary as a pandemic, he said.

A study published by Neville and colleagues last year found that 3 Wishes is a “transferrable, affordable, sustainable program” that benefits patients, families, clinicians and their institutions. They calculated that the mean cost of a single wish, funded by grants and donations, was $5.19.

Genevieve Arriola, 36, has been a critical care nurse for eight years. When the pandemic struck, she found herself juggling medical care and emotional support more than ever. She took care of Breed-Rabitoy for three days straight, all the while communicating with the dying woman’s family.

“This was a very delicate situation for someone who is married to her for over 20 years and a daughter who was miles away in Oregon and couldn’t see her mom,” she said.

She was also the nurse who held Breed-Rabitoy’s hand as she died.

“I pretty much felt honored to be that person,” Arriola said. “I couldn’t let her be alone. If no one can be there, I can.”

Weeks after her mother’s death, Breed is grappling with the loss. The last time she saw her mom was March 16, at a McDonald’s off Interstate 5 near Grants Pass, Oregon.

The pair met for less than 30 minutes before Breed-Rabitoy headed south down the interstate, her long-planned family visit cut short by concerns about COVID. She had just learned that the local dialysis center was closed to outside patients, and she was worried about growing reports of infection and death. “She told me, ‘I feel like this disease is coming after me,’” Breed recalled.

Now, the keepsakes from 3 Wishes are placed where Breed can see them every day.

“It added such a level of love and dignity we weren’t expecting,” she said. “It made the process of losing a loved one to COVID-19 so much more bearable.”

Complete Article HERE!

Should diabetes treatment lessen for older adults approaching the end of life?

by American Geriatrics Society

One in four people aged 65 or older has diabetes. The disease is the seventh leading cause of death in the United States and a major contributor to heart disease. Experts have recommended that the best way to slow the progression of diabetes—and help prevent its many complications—is to maintain strict control of blood sugar levels. For healthy younger people, this means keeping the target blood sugar level (known as A1c or HbA1c) lower than 6.5 percent to 7.0 percent.

For older adults who have a limited life expectancy or who have advanced dementia, however, maintaining that target blood sugar level may cause more harm than good. For example, these older adults may not live long enough to experience potential benefits. What’s more, maintaining these strict blood sugar levels can raise the risk of potentially harmful events such as (also known as hypoglycemia). This can cause falls or loss of consciousness.

For these reasons, many guidelines now suggest targeting higher HbA1c targets—such as between 8.0 percent and 9.0 percent—for older adults who have multiple chronic conditions or limited life expectancy, or who live in nursing homes.

There is not much existing research to guide health care practitioners as to what the appropriate levels of diabetes medications are for this group of older adults. There is also little information about the effects for these individuals of taking fewer or lower dose of diabetes medications.

Experts suspect that lessening diabetes treatment in these older adults has the potential to prevent unnecessary hospitalizations due to lowering the risk for harmful drug events and increasing the patients’ comfort.

In order to investigate the issue, a team of researchers conducted a study—one of the first national studies to examine potential overtreatment and deintensification of diabetes management in nursing with limited life expectancy or dementia. The researchers chose nursing home residents to study because admission to a nursing home could give healthcare practitioners a chance to learn more about patient goals and preferences and to review and adjust medications accordingly. The researchers published their results in the Journal of the American Geriatrics Society.

The researchers examined information from Veterans Affairs nursing homes from 2009 to 2015. Their goal was to learn more about older adults with diabetes, particularly those nearing the end of their life or who have dementia. The researchers investigated whether these older adults were overtreated for diabetes, whether they had their diabetes medication regimens lessened, and what effects might result from lowered doses, types and/or different kinds of medication.

The researchers wanted to learn specifically how often diabetes treatments were lessened. Among the nursing home residents identified as potentially overtreated, the researchers examined how much their diabetes treatment regimens were lessened during the 90 days of follow-up.

The researchers did not consider insulin dose changes, because insulin doses may be influenced by factors such as eating habits.

The researchers said they observed potential overtreatment of diabetes in almost 44 percent of nursing home admissions for veterans with diabetes and veterans who had limited life expectancy or dementia. Potentially overtreated residents were about 78 years old and were nearly all male and non-Hispanic white. Two-thirds of the residents had been admitted to nursing homes from hospitals. A total of 29 percent had advanced dementia, almost 14 percent were classified with end-of-life status, and 79 percent had a moderately high risk of dying within six months. Many were physically dependent and had and/or potential diabetes-related complications. In addition, about 9 percent of overtreated residents had a serious low blood sugar episode in the year prior, emphasizing the need for deintensification.

Nearly half of residents received two or more diabetes medications, and those with higher HbA1c values of between 6.5 percent to 7.5 percent received more diabetes medications than those with lower HbA1c.

The researchers concluded that many veteran nursing home residents with limited life expectancy or dementia may be overtreated for their diabetes at the time of admission. The researchers suggested that future studies examine the impact of deintensification on health outcomes and adverse events to better understand the risks and benefits of management strategies in this group of .

The Pandemic Broke End-of-Life Care

In a Boston ICU, staff members orchestrate goodbyes over Zoom and comfort patients who would otherwise die alone.

by

When the coronavirus came to Boston, doctors at Brigham and Women’s Hospital noticed how silent certain floors became. Any patients who could be discharged were discharged. Anyone who could stay away stayed away. “The hospital had this eerie quiet,” says Jane deLima Thomas, the director of palliative care at Brigham and Women’s Hospital and Dana-Farber Cancer Institute. But in the intensive-care units set up for COVID-19, machines beeped and whirred in room after room of the sickest patients. Those patients were sedated, intubated, and isolated. Many of them would die.

Palliative care is about providing comfort—physical and emotional—to patients who are seriously ill, including those who may be close to death. Before the pandemic, deLima Thomas’s team worked with patients with kidney disease or cancer or heart failure, but this spring, they all switched to COVID-19. They embedded themselves in the ICUs. Palliative care is a field especially invested in the power of a hug, a steadying hand, and a smile. In other words, palliative care is made especially difficult by a virus that spreads through human contact.

The first day the palliative-care doctors walked into the ICUs, Thomas says, “we felt like tourists.” They were dressed in business casual, while their ICU colleagues raced around in scrubs and masks. But the palliative-care team—which includes physicians, nurses, chaplains, and social workers—found ways to integrate themselves. In the early days of the pandemic, when protective gear was scarce, no visitors were allowed. Palliative caregivers, along with ICU nurses, held iPads cocooned in plastic bags so families could say goodbye on Zoom. They were sometimes the only one in the room when a patient died, otherwise alone. I interviewed several members of the Boston-based palliative-care team, and their stories, which have been condensed and edited for clarity, are below.

Samantha Gelfand, Fellow

In the ICU, the most immediate thing is the personal experience of walking down the hall. Nearly every patient’s room, the door is closed, and the patient is alone. And they’re often on their bellies for prone positioning. You can’t even see their faces often.

Seeing anyone who is critically ill with a breathing tube, lots of monitors and beeping, it’s not easy. When we facilitate Zoom calls with family, I say, “Listen, it may be alarming to see that your loved one has tubes and tape and monitors on their head.” They may have soft wrist guards on their arms to stop them from trying to take out their own tubes.

It doesn’t always work. I did a Zoom call with seven family members. The patient was a man in his 50s and he had seven kids, and they ranged from 18 to late 20s. I told the siblings what I could to prepare them, and still I’m holding the iPad and they start wailing. There’s a visceral experience of just devastation.

As someone’s who lost my own parent, I think wailing is appropriate. I let them. I actually think holding the silence and bearing witness is the right thing to do first. It’s very uncomfortable to watch, but I think it’s misguided to try to hush or try to shorten it. How do you comfort someone on Zoom? It sucks.

Our department has a reflection conference on Tuesday mornings. In COVID-19 times, we’re still doing this, but now we’re doing it by Zoom. One clinician will read the names of patients who died last week in our care. It’s very, very eerie to hear the list of names and have worked with probably half of them and not have seen their faces.

Usually when we sit in that room and we remember the dead, we are remembering what it felt like to talk to them, what they looked like. And this, it’s like we’re remembering what it felt like to think about the patient or what their family members’ voices sound like. I really missed the times when I could think of a face the patient made or a comment that they said. It feels like a new way of grieving.

Ricky Leiter, Attending Physician

COVID-19 doesn’t just affect individuals. It’s affecting families. I’ve had a couple cases where a married couple is in the ICU, next to each other. I was talking to a daughter whose parents were both intubated in the ICU. They were in their 70s to late 80s. Her father wasn’t doing well, and we were asking, “Should we try to resuscitate?”

I remember her saying, “I can’t think about the hard stuff right now. This is all too much right now. I can’t do that.” And of course she couldn’t. How could she? Her parents were relatively healthy before they came in. It was the suddenness of all this. In my normal palliative-care practice, those are patients who have been sick for a while. They have been diagnosed with a serious and life-limiting illness. A lot of COVID-19 patients are otherwise pretty healthy; maybe they have high blood pressure. This is an entirely new universe.

One of our fellows did five or six tough conversations like this with families in one day. I had a day like that early on. Our team walked back to our office, and everyone there asked what happened to us. We were so shell-shocked, and it felt like we were having the same conversations over and over. I don’t normally have six conversations where it’s the same disease, the same coronavirus.

Reverend John Kearns, Chaplain

My brother died 30 years ago this September. It was a life-changing experience and really oriented me into the life of loss and grief. He died of AIDS, which seems so similar now with the fears surrounding an illness that wasn’t well understood. People then were afraid to touch him or hug him. My parents were very dedicated to his care. He died at home in our bedroom that we shared as brothers.

It’s natural for people to take care of their loved one when someone’s sick. Being present for someone is part of what helps people get through it. They’re participating in some way. During this, the families have none of that participating. The first few weeks of COVID-19, we didn’t go inside the patients’ rooms. Now that we have more protective gear, they’ll let us go in, and the department has developed an iPad ministry to connect patients with family who can’t be at the bedside. Sometimes the family will email photographs and we’ll print them out and hang them in the room—photographs of the patients’ kids, wife, spouse, partner. Whether these sedated patients can see or hear is questionable, but the family gets to see, or the family gets to speak to them.

I’ve spent as much as two hours in a patient’s room. I’ve gently wiped the forehead of a patient. I’ve led prayers with the family over the patient. And they will ask us to hold their loved one’s hand. Often there’s a hope to see there’s a response, whether it’s a simple squeeze of a hand, a blink, the movement of the head—anything that gives them hope that their loved one is going to make it.

When the family wants to be seen by the patient, then you have to do the reverse camera and then hold it in such a way that they can see the patient’s face. You’re trying to orchestrate this intimate moment and sacred moment, and you’re fumbling with this iPad. Where is the camera lens on these things? And at first, we were putting these iPads in plastic bags, like a Ziploc bag, to keep it from getting germs on it. So now it’s sliding around in this bag that’s a little too big. You also have the problem of fogging up your glasses and fogging up the shield. At times, it is hard to see the face of the person or to read something or to manipulate the iPad.

There was a Muslim patient who was dying. We have a couple imams. One is actually out of the country; he has not been able to get home since COVID-19 started. The other imam wasn’t available. When the patient took a bad turn, I got called in by Ricky Leiter. As an interfaith chaplain, we also visit everyone. I had an iPad with 20 or so family members who were all over the globe. They were reciting prayers. At one point it reminded me of church bells. All those voices all over the world, coming together at the same time.

Stephanie Brook Kiser, Fellow

I’ve had family members say to me, Just please go in person and tell them in person that I love them and promise me that they won’t die alone, that you’ll be there at the bedside.

A patient I took care had been sick with COVID-19 and in the hospital for two or three weeks. He was 80 years old. His wife was just a few years younger. They had been together since they were teenagers. You can just tell in her voice that it was so hard for her to be apart from him. She said, “I can’t remember a time I’ve been apart from him for this long. I think this might be the first time since I’ve known him.” At the same time, she was living in fear in her home because she knew she had been exposed to him. Because of her age and other medical problems, she was at high risk to be at the same place he was: really sick in the ICU, with a breathing tube, not getting better at two weeks or three weeks.

It was pretty clear medically, no matter what we were doing, he was continuing to get worse and worse and worse. We had a really difficult conversation over the phone about what his wishes would be, and it was clear to her and to their children that the biggest thing we could do was transition to focus on his comfort. We knew what that would mean is he would die pretty quickly.< With the hospitals’ changing policy, if someone is actively dying, we can now allow for a family member too at the bedside. My experience in the ICU when that’s offered, more times than not family members actually say no, that they don’t actually want to come to the ICU. There’s a real infectious risk to them, and I’ve had a lot of family members say, “I don’t know that I want to see them again the way they are now. I want to remember them the way they were before.” The wife was in such distress and despair over the idea that she was so physically close in Boston but it wasn’t the right decision for her to come into the hospital. I spent a lot of time and I was even grasping at things: Can I arrange a Zoom call? Maybe I can record a video and send it to you guys? And the family was saying, We want to remember him in a different way.

They said, We just want you to go to his bedside and hold his hand so that he knows he’s not alone. And I did that over the course of about 15 minutes. He died pretty quickly.

I’ve been part of a lot of deaths of patients in palliative care. We don’t see a lot of death like this—without any family members present. We aren’t used to being that person at the bedside, trying our best to provide the comfort that a family member’s presence would provide and feeling inadequate in that at best. Afterwards I gathered his nurses and respiratory therapist and we talked. Everyone agreed it was unlike anything they had been part of.

It was the first time I had touched him. And in the ICU, probably one of the only times I’ve physically touched the patient.

Natasha Lever, Palliative-Care Nurse

I’ve been a nurse practitioner for seven years, and I was hired at Brigham to do heart-failure and palliative care. Literally the week after I started, COVID-19 happened. They had this whole very carefully planned out 12-week orientation, and I got a phone call from our director, Jane, and she said, “Either we’re going to keep you at home for the next few months or we’re just going to put you in the ICU.” I kind of got thrown into the deep end.

I went into nursing because I love to be at the bedside and with patients. Not having families and loved ones at the bedside was probably the most difficult part of all of this. It felt so wrong to us that families were having to make decisions about withdrawing care when they haven’t seen their loved ones.

I remember the one that hit me the most was a woman whose son had given her COVID-19. He had been quite ill himself, and he had recovered. The immense guilt that he felt was so profound. He kept saying—he’d obviously been watching the news—“Please, don’t throw her in a body bag if she dies.” He kept talking about how they had been so excited they were going to move into a house together and he was going to buy his first house. He had plans for her and just wanted her home so badly. She passed away and it was very difficult.

That was one of my first cases. And this was week two of my job as a palliative-care practitioner.

I remember the first day I was in the ICU, it was completely chaos. It was very loud, lots of people. Almost this adrenaline rush you felt. A couple of weeks in, things sort of settled down. Now the ICU numbers are down. I had a really strange feeling when they were closing down the COVID-19 ICUs. I walked down the hallway and it was dark and all the rooms were empty and clean and there was no one there. Two weeks ago, this was one of the most busy, chaotic places in the hospital and there was just this silence. No alarms, and no people. It was almost as though, Is this a dream, did that really happen?

Now I have just started doing the orientation that I was supposed to be doing. I’m going back to the hospital. I’m extremely excited to be at the bedside. I have never been so excited to talk to a patient in real life.

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More people are dying in American prisons

– here’s how they face the end of their lives

An inmate inside the nursing unit at Louisiana State Penitentiary.

By

Outbreaks of coronavirus have hit prison populations particularly hard – but for many inmates in the U.S., illness and the prospect of dying behind bars already existed.

Advocacy groups have flagged concerns about disease transmission, lack of medical care and deaths in custody as a result of COVID-19. But deaths in custody are not a new phenomena and the process of dying with dignity while incarcerated is complicated.

I have spent a significant amount of time examining correctional health care practices and believe the process of dying in prison is one in which human dignity can be lost.

Prisoners grow old faster and become sick earlier. By 2030 some experts believe that one in three prisoners will be over the age of 55, increasing the likely population of prisoners diagnosed with conditions such as cancer, heart disease, liver and kidney disease, high blood pressure and diabetes.

A recent Bureau of Justice Statistics report revealed a startling increase in state prisoner mortality. Between 2006 and 2016, the last year for which the study provided data, there were more than 53,000 deaths in custody. More than half of the 3,739 deaths in custody in 2016 resulted from just two illnesses – cancer (30%) and heart disease (28%).

The proportion of prisoners requiring end-of-life care is twice as high as the general population.

An inmate with cancer in Colorado Territorial Correctional Facility’s hospice program.

Outside prison walls, a diagnosis of a terminal illness often means gathering friends and family to repair and restore relationships and thinking about end-of-life options. The coronavirus has, of course, affected who can be present in someone’s last moments, but the terminally ill still have options over their medical care, pain management, who to tell and how, and getting affairs in order. For prisoners, such choices are constrained by state regulation. Prisons are not well-equipped to provide human dignity at the end of life. Terminally ill prisoners have two options: compassionate release or end-of-life care behind bars.

Showing compassion

Offering early release or parole to prisoners diagnosed with debilitating, serious and often terminal illnesses is considered compassionate release. Many in the medical profession consider compassionate release a constitutionally protected right as incarceration of prisoners with debilitating illness undermines medical care and human dignity. Others see compassionate release as a way to reduce correctional health care costs for a population posing little risk to the public. Iowa is the only state without a compassionate release law.

The process of qualifying for compassionate release is complex and statistics on how many succeed are hard to obtain, although we know the numbers are small. Prisoners’ medical conditions, age and time served determine eligibility. But exclusion criteria are extensive. For example, prisoners committing the most serious crimes are excluded. Most states allow stakeholders such as victims, police and court professionals an opportunity to say no.

For the terminally ill, release is often dependent on one’s “death clock” – how many months a medical professional certifies that you likely have before dying. In some states like Kansas and Louisiana, death must be imminent – within 30 to 60 days. In others like Massachusetts and Rhode Island, prisoners with as long as 18 months to live may be released. Applying for compassionate release can be daunting for someone with only months to live. Sadly, some die before they can complete the process.

Even if an inmate does get out, their family may be ill-equipped to deal with the challenges of caring for a dying loved one. In these cases, release may result in transition from one restrictive, isolated, institutional setting to another with care provided by unfamiliar medical professionals.

End-of-life sentence

States must provide medical care to prisoners even though they are being punished for a crime. But the quality of such care is often inadequate. The prisoner does not get to select medical options; care is determined by the state. Death could mean dying alone in a prison cell, in an infirmary with only periodic check-ins from a nurse and prison volunteers or in a hospice unit managed by the state.

Pain management may be restricted by correctional policy and by staff who are reluctant to administer narcotics, such as morphine, to ease suffering out of concern that it could be sold or used illicitly. A recent report in the American Society of Clinical Oncology Post discussed how inadequate care caused unnecessary pain and suffering in prison and concluded: “No one in a wealthy and socially advanced country like the United States should suffer from untreated pain, especially at the end of life.”

While families are allowed to visit terminally ill prisoners, notification of the illness rests with the prisoner – a daunting task if the prisoner has lost touch with relatives over years incarcerated. State prisoners are often confined far from home, so even family members who would like to visit may be hampered by distance and cost. Another challenge for families is the bureaucratic process of prison admission. It is correctional staff at the gates rather than medical professionals determining who gets to visit on any given day.

Access to a mainstream faith leaders and last rites are provided when available. But it is not uncommon to find spiritual practices for the dying prisoner carried out by fellow prisoners.

For terminally ill prisoners “getting one’s affairs in order” includes trying to identify someone in the community willing to take responsibility for their body after death and ownership of personal effects gathered during incarceration. Even if the prisoner identifies a relative willing to take responsibility, there are no guarantees. A relative may be disqualified from handling prisoner affairs. In Ohio, for example, if the prisoner’s loved one is unable to accept the body within two days after notification, the relative may be disqualified.

If no one comes forward, then the prisoner will be buried in an indigent grave and prison officials will dispose of the prisoner’s belongings and monies remaining on prisoner accounts.

Complete Article HERE!

Sometimes a ‘Good Death’ Is the Best a Doctor Can Offer

Despite everything we do, we have lost so many battles with Covid-19

By Dr. Hesham A. Hassaballa

There has been so much clinician distress with the Covid-19 pandemic. So many physicians, nurses, and health care professionals have suffered physical, emotional, and moral difficulty taking care of severely sick patients. Some have even committed suicide.

As an ICU physician, I feel this firsthand and believe the reason for the anguish is that we, as critical care doctors and nurses and health professionals, are used to making a difference in the lives of our critically ill patients. Yes, we do lose some patients despite all that we do. But, for the most part, the majority of the patients we see and care for in the ICU get better and survive their critical illness.

Covid-19 has upended all of that.

Before Covid, I would not think twice about placing someone on a ventilator. It is a life-saving measure. With Covid, however, many patients who go on ventilators never come off. This is very distressing.

It is just so hard to try and try and try — spending many waking and sleeping hours — to help these patients pull through, only to have them die on you. Many times, the deaths are expected. Sometimes they are not, and those deaths are the most difficult to bear.

We are used to seeing death in the ICU. It is inevitable that some patients, despite all that we do, are going to die. With Covid, however, it is different. So many have died, and what makes it so hard is that these people are dying alone. Their families are only left to watch them die, if they so choose, on FaceTime or Skype. I’ve lost a daughter to critical illness. I cannot imagine the horror of not being able to be there at her side.

I was speaking to a fellow ICU doctor, and he told me that it seems all he is doing in the ICU is ensuring a “good death” for his patients, and this has deeply bothered him. He is not used to this amount of death. None of us are. It is very, very hard.

Is there any such thing as a “good death”?< It seems oxymoronic that the words “good” and “death” can be juxtaposed. As doctors, our whole existence is to prevent our patients from dying. So, in one sense, there is no such thing as a “good death.” To be sure, I have seen plenty of “bad deaths” in the ICU. Of course, those include patients whose death was unexpected. At the same time, there are patients who we know (despite everything we do) will not survive. In those cases, we do our best to make sure the patient does not suffer. If a patient dies while suffering pain or distress, or they get care that is not consistent with their values and wishes, then — to me, at least — this constitutes a “bad death.” But, indeed, there can be a “good death.”

None of us knows when or where we are going to die… If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome.

As a doctor, especially an ICU doctor, it is awesome to see our patients do well and survive critical illness. It gives me an indescribable feeling of warmth and joy, and it is the fuel that keeps me going for a very long time. This joy has only been amplified during the Covid crisis. Watching one of our patients — who was very sick and I thought for sure going to die — walk out of the hospital on his own made me absolutely ecstatic.

Sadly, however, that experience has been fleeting with Covid, which has been so disheartening. Yet, even in death, there is an opportunity to do good. Even in death, we can do all that we can to ensure our patients die in peace, without pain, without suffering, and with the dignity they deserverecent study found that approximately 25% of patients experienced at least one significant pain episode at some point in the last day of life. More than 40% of patients experienced delirium. Delirium is an altered state of consciousness, and as ICU doctors, we work very hard to minimize this experience in our patients. In more than 22% of ICUs in America, there were high rates of invasive therapies at the time of death. Almost 13% of patients were receiving CPR at the time of their death, and more than 35% of patients died on a ventilator.

If getting CPR or being on a ventilator will only prolong suffering, or if either is not consistent with a patient’s wishes or values, then I — as their physician — must do everything I can to ensure this does not happen.

When I speak to families on the phone, trying to comfort them in the face of the death of their loved one, I promise this one thing: “I promise you that your loved one will not suffer. I promise you that I will make sure they are not in pain or in distress.” It doesn’t make the death of their loved one any easier, I know, but it is the absolute least I can do to make a horrible situation better.

None of us knows when or where we are going to die. Many (if not most) of us do not know what will cause our death. Those factors are beyond our control. If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome. That is a “good death.”

And if it is inevitable that a patient will die, and I can help that patient die a “good death,” then that is my job. And in that duty, there is some good, some light, in the overwhelming darkness of this pandemic.

Complete Article HERE!

Dying virtually

– Pandemic drives medically assisted deaths online

The late Youssef Cohen moved from New York to Oregon in 2016 because of its aid-in-dying law. During the pandemic, assisted dying for terminal patients has gone online.

By

The coronavirus has stripped many of a say in the manner and timing of their own deaths, but for some terminally ill people wishing to die, a workaround exists. Medically assisted deaths in America are increasingly taking place online, from the initial doctor’s visit to the ingestion of life-ending medications.

Assisted dying laws allow terminally ill, mentally competent patients in 10 U.S. jurisdictions to hasten the end of their life. Waiting periods of 15 to 20 days mean that patients with acute COVID-19 won’t likely meet the requirements of these laws.

But the move to digitally assisted deaths during the pandemic has enabled other qualified patients to continue to exercise the right to die. While telemedicine is helping some people die on their own terms, it also makes the process harder on family members, who must now take a more active role in their loved one’s final act.

Assisted dying in America

I have spent the last four years studying assisted dying in America, particularly in Oregon and Washington, which have the country’s longest-standing assisted dying laws. California, Colorado, the District of Columbia, Hawaii, Maine, Montana, New Jersey and Vermont also allow medical assistance in dying.

A quirk in these laws has enabled the process to go virtual. While extremely restrictive in most ways, U.S. assisted dying laws don’t require a physician or other health care provider to be present at an assisted death.

Assisted dying laws require two doctors to independently evaluate a patient’s request for medical assistance in dying. But patients must be physically able to ingest the life-ending medication themselves, a safeguard that ensures they are acting voluntarily.

In Canada, by contrast, clinicians typically administer the lethal dose through an injection. Normally that’s a faster, safer and more effective method. But COVID-19 concerns are compelling some Canadian providers to suspend assisted deaths.

Attending to the dying

Though U.S. physicians aren’t required to attend an assisted death, many patients and their families do have help. In 2019, according to the Oregon Health Authority, 57% of all assisted deaths in Oregon were attended by a physician, another health care provider or a volunteer.

Trained volunteers – many of them former nurses, social workers and behavioral health experts – are critical in helping patients navigate the tricky path toward an assisted death. They know which physicians are willing to see aid-in-dying patients and which pharmacies stock the necessary medications.

In the United States, doctors prescribe a compound of four drugs – digoxin, diazepam, morphine and amitriptyline – to be mixed with water or juice. Within minutes of drinking the cocktail, the patient falls asleep, the sleep progresses to a coma, and eventually the patient’s heart stops.

Volunteers help mix the medication and supervise the ingestion, allowing families to be emotionally present with a dying loved one.

Now, because of the coronavirus, volunteers are accompanying patients and families over Zoom, and physicians complete their evaluations through telemedicine, based on recommendations released by the American Clinicians Academy on Medical Aid in Dying in March 2020.

Telehealth – a health care solution long used in remote areas – has become a critical tool of the COVID-19 pandemic. But some aid-in-dying physicians have drawn on telemedicine to reach far-flung patients for years.

“My patients love telemedicine,” Dr. Carol Parrot, a physician who lives on an island in Washington, told me during a Skype interview in 2018. “They love that they don’t have to get dressed. They don’t have to get into a car and drive 25 miles and meet a new doctor and sit in a waiting room.”

Parrot says she sees 90% of her patients online, visually examining a patient’s symptoms, mobility, affect and breathing.

“I can get a great deal of information for how close a patient is to death from a Skype visit,” Parrot explained. “I don’t feel badly at all that I don’t have a stethoscope on their chest.”

After the initial visit, whether in person or online, aid-in-dying physicians carefully collate their prognosis with the patient’s prior medical records and lab tests. Some also consult the patient’s primary physician.

‘Tough and tender situations’

The pivot to telemedicine hasn’t significantly changed that process. But patient advocacy organizations and physicians say the pandemic has amplified existing problems of access to assisted dying.

“These are tough and tender situations even without COVID,” said Judy Kinney, executive director of the volunteer organization End of Life Washington, via email.

Invariably, some terminally ill patients who wish to die face barriers. Some assisted living and nursing facilities have policies against assisted dying for religious reasons.

During the pandemic, residents in these institutions who lack access to a digital device – or the skills to videoconference with a doctor – may not be able to qualify for the law, according to Dr. Tony Daniels, a prescribing physician from Portland.

Meanwhile, a family member who objects to assisted dying may more easily undercut the process when a volunteer isn’t there in person to make sure a patient’s final wishes are carried out.

Facilitating death

Dying via telemedicine can be hard even on family members who stand behind their loved one’s decision, my research finds. Without a volunteer or physician present, families must assume a more active role in the dying process.

That includes mixing the life-ending medications themselves. Pre-pandemic, many families told me that preparing the lethal cocktail would make them feel like they were facilitating – and not just morally supporting – a loved one’s death. They were glad to outsource this delicate task.

Now they don’t have that choice.

Yet the option to assist in a loved one’s final act may be a comfort in this pandemic. It allows dying people to choose the manner and timing of their own death – and ensures they won’t be alone.

Complete Article HERE!

How COVID-19 May Reframe End-of-Life Care Planning Engagement

The COVID-19 pandemic has renewed patient appreciation for end-of-life care planning, pushing providers to explore best practices for engaging these conversations.

By Sara Heath

For years, the concept of end-of-life care planning has been elusive to intensive care unit (ICU) providers. Not a lot of patients have engaged in these types of communications, and it hasn’t been hard to see why: end-of-life care planning is by nature a grim topic and can make a lot of people — including clinicians — feel uncomfortable.

But that’s started to change now that the COVID-19 pandemic has gripped the nation. At this point, over 100,000 people have died from the novel coronavirus, and it’s pushed end-of-life care planning as a key topic of conversation.

“The virus and the pandemic shined an important light on end-of-life care planning and the need for people who don’t have medical problems to still consider what their wishes would be. That’s because this virus can unfortunately strike folks who are healthy,” said Lauren Van Scoy, MD, a pulmonary and critical care physician at Penn State.

The number of patients coming into the ICU with an advance directive or having discussed some kind of end-of-life wishes with their family members of providers was scant prior to the pandemic. Patients and providers alike have long been uncomfortable with these types of conversations, largely because talking about death can be difficult and scary.

Per 2016 data, many hospitals don’t have much of a protocol for engaging patients in advance care planning or recording end-of-life wishes. Meanwhile, just under half of providers are uncomfortable with addressing the topic with their patients because they are unsure of what to say, the survey out of the John A. Hartford Foundation, the California Health Care Foundation, and Cambria Health Foundation revealed.

Several providers said that they struggle with identifying the proper time to broach care planning with their patients. Forty-eight percent of providers didn’t want their patients to think that they were giving up on them, and 46 percent didn’t want their patients to give up hope.

But this lack of advance care planning between patient and provider or patient and family member can have negative consequences down the line. For the patient, it decreases the likelihood she will receive hospice care at the end of her life and increases the odds she will receive intensive therapies, which can be both costly and unwelcomed by the patient.

And for the family, limited understanding of a loved one’s end-of-life care wishes can lead to serious distress.

“Care planning is so important because not only does it help the patient to receive care that’s consistent with their wishes, but it also helps the family members to have a lower-stress experience,” Van Scoy explained. “They have less psychological morbidities afterwards, and less stress related disorder.”

The data show that up to 30 percent of families who have to make end-of-life decisions experience post-traumatic stress disorder symptoms, Van Scoy pointed out, referencing a seminal study published in American Journal of Respiratory and Critical Care Medicine.

“That’s one of the things that advanced care planning can help to reduce the likelihood of, the stress related symptoms, so that’s why it’s really important for both the patient and the family,” she added.

Of course, advance care planning hasn’t totally been unheard of. In 2015, CMS said it would start paying Medicare providers for holding advance care planning talks with patients, with the goal of improving the quality and experience of end-of-life care and potentially decreasing the use of costly and intensive therapies. Increasing reimbursement for these activities potentially served as an incentive to increase engagement.

And older adults, knowing they may be nearing the end of their lives, have also been at least somewhat receptive to these conversations.

“As people get older, they’re more likely to do advanced care planning,” Van Scoy said, suggesting that this is not enough.

“As we know, medical catastrophe can happen for anyone of any age. We’re often faced with patients, particularly in the ICU, who have not had conversations about what their goals are, what their wishes are, what their preferences are. Families are often quite distressed when having to make decisions.”

But again, that trend has started to change, as more Americans face the reality that they could contract the novel coronavirus. And although COVID-19 has a pronounced impact on individuals with comorbidities, the fact of the matter is anyone could succumb to it.

“The virus has given us an opportunity to have that teachable moment to show that, whether you were diagnosed with coronavirus, or have cancer or a car accident, or some other sort of acute and unexpected illness, it’s always good to have good care planning done in advance,” Van Scoy stated.

“The coronavirus pandemic has allowed people to think about it in a new context as opposed to, ‘advanced care planning is just for old and sick people, not for me,’” she continued. “Now we’re having a conversation nationally about ventilators and ICU use and people needing emergency critical care. People are thinking, ‘gosh, I very well could end up on a ventilator.’ The coronavirus has changed the conversation to be more relevant, more pertinent, and brought it to a broader scope of Americans, not just elderly or those with illness.”

And while patients and providers alike are facing a renewed appreciation for advance care planning, Van Scoy has uncovered new strategies to make these conversations more palatable. After all, just because more patients recognize the need for advance care planning doesn’t make these conversations any less uncomfortable.

As part of her research on patient experience and communications in the ICU, Van Scoy has developed a game that brings advance care planning into the community in an agreeable way. The game, titled Hello, can be delivered in both the healthcare facility or in a community-based setting as it pushes patients to consider what is important to them at the end of their lives.

“The Hello tool is a game that allows patients and their families and friends to come together and talk in a way that’s sort of less serious and less intrusive,” Van Scoy explained. “The game features questions that are asked in a way that are easy to answer. Questions are things like ‘what music would you want to be listening to on your last day of life’ or ‘what are three non-medical facts that your doctors should know about you.’ It approaches this topic in a very soft way, but yet it’s still getting into the meat of the problem.”

And the qualitative data shows this approach has been effective, especially in traditionally marginalized populations for whom end-of-life care planning is even less prevalent. Van Scoy largely credits this to the community-based setting in which she has deployed Hello.

“We leverage those networks to get individuals set up to have these conversations in places outside the healthcare system,” Van Scoy noted. “Users are comfortable and they can lean on each other as opposed to leaning on the healthcare system, which in underserved populations have had some historic problems with trust.”

This new information about carrying out advance care planning will be essential going forward, as the COVID-19 crisis ideally renews patient and provider appreciation for these conversations. As the healthcare industry works to adapt to the novel coronavirus, understanding the best ways to address end-of-life wishes will help providers treat their ailing patients with dignity.

Complete Article HERE!