Tag: End of Life Care

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Spotting Elder Abuse: Tips for Long-Distance Caregivers

From a distance, it can be hard to assess the quality of your family member’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going.

Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help.

You can stay in touch with your family member by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and neglect.

Sometimes the abuser is a hired caregiver, but he or she can also be someone familiar. Stress can take a toll when adult children are caring for aging parents, or when an older person is caring for an aging spouse or sibling. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer’s disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily.

But no matter who is the abuser or what is the cause, abuse and neglect are never acceptable responses. If you feel that your family member is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, talk to someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.

Learn more about the signs of elder abuse and how to get help.

Read about this topic in Spanish. Lea sobre este tema en español.

For More Information About Elder Abuse

Eldercare Locator
1-800-677-1116 (toll-free)
https://eldercare.acl.gov

National Committee for the Prevention of Elder Abuse
info@preventelderabuse.org
www.preventelderabuse.org

National Center on Elder Abuse
1-855-500-3537 (toll-free)
ncea-info@aoa.hhs.gov
https://ncea.acl.gov

Complete Article ↪HERE↩!

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The cost of not talking about death to dying patients

By Colleen Chierici

Will you know when it is your time to die? It is a question that has permeated my mind since July 14, 2017. This was the day my mother died. It was a sad day, but it pales in comparison to the months preceding it. A breast cancer that had returned aggressively, a hasty port placement to receive chemotherapy that was too late  and an ICU admission that began many futile interventions that never saved her life, but prolonged my mother’s suffering.

As a registered nurse, I watched a scene unfold that I swore to myself I would never let happen to anyone I loved. Yet, there I was listening to an oncologist discuss a 30 percent chance she would respond to chemo (which did not mean she would be cured) and choosing this inappropriate treatment for my critically-ill mother. I was party to these decisions when my mother couldn’t make them and when she made some recovery in her mental status, she also chose to continue treatments.

Were these decisions well founded? They were missing a key piece of information, that even with my training, I failed to see. My mother was dying. She was dying and none of my mother’s care providers were able to say those words.

Would my family have chosen a different path for my mother, if there had been a more explicit conversation? Resoundingly, yes. If my mother’s health-care providers would have had a deliberate discussion about her impending death my family would never have chosen chemotherapy and instead chose to initiate hospice care.

As a nurse, I have a duty to advocate for patients. Advocating can take many forms, but most often, it is helping patients navigate the complexities of the health-care system as well as explaining the meaning of test results, procedures, and diagnoses. Often, answering the question “What does this mean for me?” In my own practice, I have helped many patients understand the life changes needed to manage, diabetes, heart failure, and coronary artery disease.

But, like the nurses who provided care for my mother, I struggle having explicit conversations about dying with my patients. This does not appear to be an isolated phenomenon. In a 2018 study, researchers in Australia surveyed acute care and critical care nurses to assess their understanding and utilization of end-of-life discussions and care planning. They found that nurses’ own knowledge and rates of participation are low when it comes to end-of-life care.

On the other side of this, is a patient who may not be making a well-informed decision, because they don’t understand their disease is life-limiting or that they are dying. When the focus is shifted from “fighting to live” to “death is imminent,” other care decisions can be made by these patients. They can choose hospice care. Patients who have a prognosis of 6 months or less are eligible.

In hospice, care is shifted from procedures, tests and medications that can cause discomfort or pain for the patient, to comfort measures that improve the quality of one’s last days. Medicare, who pays for this benefit, found that only 12-25 percent of beneficiaries’ days during the last year of life are being spent in hospice. Are we having these conversations with our patients too late? I have coordinated and provided care for patients who only hours before their death have been enrolled in hospice, even though their diagnosis had been terminal and had been known by the patient’s providers for months.

To be sure, there are nurses who are adept at having these difficult discussions about death with patients and their families. But it is not a skill that comes easy to the majority of the profession. Fortunately, there are resources available to help nurses facilitate these conversations in an effective way.

The End-of-Life Nursing Education Consortium (ELNEC) project, for example, is a national education initiative that seeks to educate nurses on better end-of-life care. Their curriculum includes coursework on how to lead effective communication during end-of-life care.  

Perhaps, we need to re-evaluate how we train our nurses to have conversations about death and dying. Have those who are experts at these discussions share their wisdom and teach nurses how to have these conversations in an empathetic and impactful way so that patients can receive the comfort and dignity of hospice care in a timely manner. If we can make these changes in our communication with patients and their families, perhaps, one day we will all know when it is our time to die.

Complete Article ↪HERE↩!

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When Is the Right Time for Hospice Care?

Caregivers should know what hospice involves and how to navigate the decision

By John F. Wasik

When my 91-year-old father returned from the hospital after a bout of pneumonia and was readmitted scarcely a week later, his doctor suggested that hospice care was probably a good idea. He was extremely frail and barely able to walk. His overall health wasn’t improving.

Like most people eyeing hospice care as the end stage of medical intervention, I was reluctant to make that decision. What if he could get better? Wasn’t hospice only for people with a few weeks — or days — to live? Was I being unrealistic about his condition?

Such questions often torment families. It’s one of the most difficult health care decisions you’ll make because of hospice’s astounding recognition of mortality. According to the Centers for Disease Control and Prevention (CDC), hospice care involves more than 1.3 million patients and 4,000 agencies — most of them private — but it’s still not well-understood and often offered much too late.

How Hospice Works

Medicare pays for hospice care for people who are terminally ill, “with a life expectancy of six months or less, if the illness has run its normal course,” according to Medicare.gov. While that definition sounds muddled — many could live for only a few days or several years — it’s a different philosophy of care. It’s rare that hospice patients survive for half a year. The average hospice from 2011 through 2016 was 71 days or about 2 1/2 months, according for the Center for Medicare and Medicare Services.

Medicare defines hospice care as a “specially trained team of professionals and caregivers providing care for the ‘whole person,’ including physical, emotional, social and spiritual needs.”

At the core of hospice is palliative care — making the patient feel as comfortable as possible and not directly treating an illness. Medicare offers hospice through its Part A, but a patient must be certified by both a regular and hospice doctor that he or she has only six or fewer months to live. You still pay your regular Medicare Part A and B premiums, plus $5 co-payments for prescription drugs. (Note: Medicare supplemental policies can cover co-payments, depending upon the plan).

A Misunderstood Option

The major difference between hospice care and conventional treatment is no longer isolating and treating specific causes of health issues. “The biggest myth of hospice care is that you have to relinquish all treatments,” says Ruth Finkelstein, executive director of the Brookdale Center for Healthy Aging at Hunter College and the City University of New York (CUNY). “You’re only relinquishing ‘further extreme measures’ such as another course of chemotherapy.”

While hospice care can be offered in facilities, it’s generally given in the home and includes counseling, drugs and equipment like hospital beds. There’s also support and counseling for the family.

But the biggest barrier with hospice isn’t its end-of-life focus, it’s the fact that most patients and families choose it too late, says Finkelstein. Relieving pain — the centerpiece of palliative care — should be considered earlier rather than later in the process. And you don’t have to be terminally ill to receive it.

“The time for palliative care is anytime,” says Finkelstein. “Look at the situation from the patient’s and family’s point of view. Anytime something serious is happening [with pain management]: How do you want to handle it? You can employ a ‘pain team.’”

Making the Decision

After weighing what hospice care entailed, I enrolled my father with a local hospice care provider. The paperwork was simple: three Medicare authorization forms. While it hardly put my mind at ease over his state, I knew he would receive care that focused on day-to-day comfort instead of endless treatments and tests.

I sat down with the hospice provider and the care manager of his senior living center to discuss what hospice meant in practical terms. When would narcotics be administered? What happened beyond the six-month Medicare limit for coverage? Would I have some control over the kind of care offered?

Since I had health care power of attorney and my dad had dementia, I would be consulted on his care. He could qualify for more benefits if his conditions improved, which happens in a handful of cases. That was somewhat reassuring. Focusing on his comfort, the hospice company ordered a hospital bed to reduce the incidence of bed sores. They also increased his nurse visits and monitored his painkillers.

No heroic medical measures would be offered, though, which is hard for most families to accept. The hospice providers were trying to make my father feel as comfortable as possible and add a measure of peace to his life, which had been marked by a series of diagnostics for maladies that couldn’t be cured under ordinary means. He’d still be given antibiotics for frequent urinary tract infections, which are common in older people, but he wouldn’t be shipped off to the hospital at the first sign of trouble.

It’s Never Easy

The decision to enter into hospice care is painful. How can a family best approach it?

Try to get everyone on the same page. Evaluate the prospects of a loved one getting better with conventional treatments compared to the suffering that extensive medical care will entail. Does the person have multiple chronic conditions? Is the person gravely ill?

Sit down with a hospice provider, who can be recommended by a doctor, hospital or long-term care facility, and ask how the provider would respond to specific situations. If you’re searching for a hospice provider on your own, you can obtain a referral from Medicare (800-633-4227) or at Medicare.gov/hospicecompare. You’ll want to make your selection carefully; a new Government Accounting Office study of the Medicare hospice program found that “hospices do not always provide needed services to beneficiaries and sometimes provide poor quality care. In some cases, hospices were not able to effectively manage symptoms or medications, leaving beneficiaries in unnecessary pain for many days.”

Ask the provider staffers under what conditions they take a person to the hospital. What drugs will they use to relieve pain and how often? How do they handle overall management of care?

Hospice is less about what we think modern medicine should do and more about finding a small sense of serenity in one’s final moments. It may be little consolation to most families, but it’s a more compassionate approach that can strive to ease suffering.

Complete Article ↪HERE↩!

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When your child is 59 ‘going on 70’:

Couple talks joys of raising son with Down syndrome, challenges of early aging

Tom and Rosemary Ryan talk candidly about raising their son, Kevin, who has Down syndrome, Oct. 1, 2018, at Smith Crossing in Orland Park.

By Donna Vickroy

Tom and Rosemary Ryan’s story parallels the story of Down syndrome these past 59 years.

Not only has the Orland Park couple lived the joy, challenge and learning curve that accompanies raising a child with special needs, they’ve dedicated their lives to pioneering change in governmental support, educational opportunities and societal views.

“A lot has changed over the years,” Rosemary said. “We’ve come a long, long way.”

Like many parents of special needs children, love thrust them into the world of advocacy. When there was no preschool for their son, Rosemary started one. When the concept of housing adults with Down syndrome in group homes instead of institutions was proposed, they jumped on board — landing smack in the center of a national debate and garnering the attention of ABC-TV’s “Nightline” with Ted Koppel.

And, now, as their oldest son endures perhaps the cruelest of characteristics often associated with his condition — accelerated aging — the Ryans are again at the forefront of the discussion.

Kevin Ryan is 59 but a checkup last spring revealed “he’s more like going on 70,” Rosemary said. “He’s gonna pass us up.”

Raising a child with Down syndrome is “perpetual parenthood,” Rosemary said, “if you are committed to wanting the best for them.”

Now in their 80s, the Ryans, who live at Smith Crossing retirement community, are simultaneously discussing end-of-life care for themselves and for their son.

Into the light

Tom Ryan holds a photo collage featuring his son Kevin, who has down syndrome, Oct. 1, 2018, at Smith Crossing in Orland Park.

When Kevin Ryan was born Aug. 4, 1959, Tom and Rosemary felt the way many parents of newborns with special needs felt back then — alone. The support and advice that today are showered upon parents of babies born with Down syndrome was nonexistent then, Rosemary said.

Three pediatricians examined Kevin and agreed he had the condition characterized by an extra chromosome.

“They called it ‘Mongolism’ back then,” she said.

In those days, there were no prenatal tests to predict it, nor any way to prepare for it, she said.

“We didn’t expect an anomaly with our first baby, but it was meant to be,” Rosemary said.

The “new” thinking at the time was that the couple should take their newborn home, she said.

And that’s where the advice ended. Rosemary could find only one very dated guidebook at the library that she said was so negative, “I couldn’t get past page three.”

So she relied on her instincts and on training she’d received en route to becoming a pediatric nurse to get through the early years, she said.

“And we just kind of forged ahead,” she said.

The Ryans went on to have three more children, with their second son quickly passing his older brother developmentally. Rosemary gave up her nursing career to stay home and care for the children.

Testing had revealed that Kevin was on the border of EMH (educable mentally handicapped) and TMH (trainable mentally handicapped), she said.

Those terms have fallen from the lexicon, along with “Mongolism,” but what Kevin’s score meant, Rosemary said, was that he’d struggle in an academic program, but likely excel in a training setting. They chose the latter.

“Back in 1962,” she said, “public schools had EMH but no TMH.”

The Ryans were living in Jacksonville, Ill., then and Rosemary and another mom decided to start a school in a nearby church. They set up an advisory board with a host of professionals and townspeople, and hired two teachers.

Kevin attended for a year and a half, until Tom, who had given up teaching high school to work at State Farm Insurance, was transferred to the south suburbs.

Changing laws, changing attitudes

om and Rosemary Ryan look through family photos Oct. 1, 2018, at Smith Crossing in Orland Park.

While Rosemary had been organizing a school in central Illinois, other parents were doing the same in Chicago Heights. In 1965, after the Ryans moved to Park Forest, Kevin began at privately run Happy Day School.

Ten years later, Public Law 94-142 mandated public school be available to all kids ages 3 to 21 (later extended to age 22), and Kevin transferred to SPEED Development Center in Park Forest.

SPEED, Tom said, “was the creme de la creme” and Kevin continued there until he turned 21 and returned to Happy Day for adult workshop.

The end of public school life often is a time of great concern and confusion for parents of children with special needs, Tom said, particularly if they haven’t planned ahead.

“Some people choose to have their adult kids just stay home,” Tom said, but that can lead to problems if the parents’ health begins to fail.

Kevin continued attending workshop at Happy Day and living with his parents until 1995.

NADS

At age 59, Kevin Ryan, who has Down syndrome, is dealing with the health issues of a 70-year-old, his parents say.

Down syndrome is the most commonly occurring genetic condition, said Linda Smarto, director of programs and advocacy at the National Association for Down Syndrome in Chicago.

Approximately 6,000 babies with the condition are born each year in the United States, Smarto said. That translates to 1 of every 730 live births, a number that seems to be on the rise, she said.

“When my daughter was born 24 years ago, the number was 1 in 1,200,” she said.

“Eighty-five percent of (these) children are born to moms 35 years old and younger,” she said. “So it’s a great myth that (Down syndrome) only occurs to parents who are older.”

While individuals with the condition develop more slowly at the beginning of life, the end of life seems to rush at them. Not everyone with Down syndrome is afflicted with premature aging, Smarto said, but there does seem to be a precursor to that and Alzheimer’s disease.

“Down syndrome, (researchers) say, will find the cause for Alzheimer’s because (scientists are) really pushing to find some sort of a cure and learn why this is happening,” Smarto said.

The phenomenon can be heartbreaking for loved ones already wrestling with end-of-life care decisions. What to do with aging children who have Down syndrome is a huge concern, Smarto said, especially if the individual has medical issues.

But, she added, it’s the same concern for anyone with a disability. And it’s the same for elderly adults who don’t have a living child to help care for them, she said.

If a sibling or other family member isn’t available to assist, an individual may be placed in a state-run home. “Our goal is to have our individuals either live independently or with a family member,” she said.

Smarto said most of NADS referrals come from the south suburbs.

“We don’t really know why the occurrence of Down syndrome is a little more prevalent there. (Advocate) Christ delivers about 4,000 babies a year and we get a lot of referrals from there. But it’s also a higher level hospital that sees patients who need special care. And they have a special care nursery,” Smarto said.

“But it is interesting the statistics (when compared) to (Northwestern Medicine’s) Prentice (Women’s Hospital in Chicago), which delivers 10,000 babies a year and the commonality is not as much,” she said.

Smarto said much of the evolution of Down syndrome inclusion is owed to parents like the Ryans, moms and dads who’ve helped usher in change by volunteering, serving on boards and doing the work. Many of the improvements in the special needs community, she said, is credited to parental advocacy.

15 minutes

In the early 1990s, a group out of Galesburg came to Happy Day, now called New Star Services, and told parents they were going to start building group homes in neighborhoods, Tom recalled.

It was a new concept sweeping the country, he said, and they had found a lot on Broadway in Chicago Heights.

The Ryans were among several parents who signed on. At the time, Kevin was 31 and eager to get out on his own, Rosemary said, because his younger siblings had flown the coop.

But the city of Chicago Heights fought the idea and became “the test case for the nation,” she said.

“Chicago Heights took on the federal government,” she said. “Who do you think won?”

The battle introduced many to the acronym NIMBY (Not in My Backyard) and made national headlines. A photographer from U.S. News and World Report visited the Ryan’s home and a picture of Kevin ended up on “Nightline,” Rosemary said.

The city lost and had to pay the agency and the prospective residents, she said.

“Kevin got his check for $1,000 and we took him to Hawaii,” Rosemary said.

Early aging

Rosemary Ryan recommends the book “The Guide to Good Health For Teens and Adults with Down Syndrome” by Dr. Brian Chicoine.

In 1992, the Adult Down Syndrome Clinic opened in Park Ridge. Run by NADS, the facility introduced the Ryans to Dr. Brian Chicoine, and what Rosemary calls “a world of support.”

Rosemary calls Chicoine’s book, “The Guide to Good Health for Teens & Adults With Down Syndrome,” the “Dr. Spock for parents of kids with Downs.”

Kevin continues to see Chicoine — these days for premature aging symptoms. His hearing is declining, he’s having trouble with his teeth, he walks with a cane, Rosemary said.

In 2012, fearing their son might encounter early aging issues down the line, the Ryans moved Kevin out of the group home and into Good Shepherd Manor in Momence.

“We got to thinking, if he was left in a group home environment and his physical or mental health declined, their only option is to put him in a (Medicaid) nursing home,” Rosemary said. “We didn’t want that.”

Good Shepherd Manor, Tom said, is the closest thing to a forever home. It serves 125 adults, many of them aged.

“They’re committed to lifetime care, no matter what happens,” Rosemary said. “If he gets dementia, if hospice is needed, they’ll take care of it.”

Now, Rosemary said, Kevin’s lifestyle mimics that of his parents. “We have every level of care we’re ever gonna need here (at Smith Crossing), and so does he there,” she said.

The Ryans’ other children are scattered from Maine to Hawaii, with Kevin’s closest sibling living 1,000 miles away, so, Rosemary said, “If Kevin outlives us, we’d like him to stay at Good Shepherd because that’s what he’s familiar with.”

Raising Kevin has always been about choosing the best path for him, Rosemary said.

Special needs can mean special, or additional, considerations, she said, but the condition can also bring a special kind of joy.

Their son has had many positive life experiences, including participating in Special Olympics, attending Prairie State College, serving as a church usher and holding several jobs in the community.

“He’s truly been a joy,” Rosemary said. “But it is hard watching him age. You almost forget you’re a senior citizen because you’re taking care of a senior citizen.”

Kevin, she said, “is still funny. He’s still a character. He still steals the limelight at family get-togethers.”

And, Tom said, a quiet day is when Kevin calls only two or three times on his cell phone.

“In a way,” Tom said, “he is sort of the person who ties our family together.”

Although Dr. John Langdon Down first identified the condition marked by an extra chromosome in 1866, it wasn’t until the 1970s that “Mongolism” was renamed Down syndrome.

“Some people,” Rosemary said, “like to call it ‘up syndrome,’ because the people who have it are more up than down.”

Complete Article ↪HERE↩!

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The End-of-Life Care That Veterans Need

How to ensure comfort and dignity come first

By Carole Quackenbush

Every veteran is unique, with a lifetime of memories, stories and achievements. At the same time, veterans share a common experience regardless of when and where they served. The rigors of military training, the bonds developed among service members, long separations from family and loved ones and the severe stress of combat all form a veteran’s character. It’s common for intense emotions and memories to resurface at the end of a veteran’s life, sometimes to the surprise of family members who are hearing these things for the first time.

Physical, Emotional and Psychological Pain

The harsh toll of war includes disease, disability and illness that can complicate end-of-life care. Depending on the war, veterans may have been exposed to ionizing radiation, Agent Orange, open-air burn pits, battlefield transfusions, below-freezing temperatures and infectious diseases. These exposures put them at a higher risk for a variety of cancers, Type 2 diabetes, kidney disease, heart disease, hepatitis C, respiratory illnesses, malaria, tuberculosis and more.

Symptoms of depression and post-traumatic stress disorder (PTSD) can arise at the end of life, even if they weren’t present before. Sometimes clinical symptoms can mimic those of PTSD, including traumatic recollections, flashbacks, hypervigilance, hyperarousal and agitation and nightmares. These symptoms are often prompted by an emotional or traumatic experience such as receiving a terminal diagnosis.

In addition to physical and psychological conditions, veterans might feel like purging themselves of memories by discussing their military experience with others — sometimes for the first time. Veterans can also have concerns about how their families will manage after the veteran dies.

Navigating End-of-Life Needs for Veterans

At VITAS Healthcare, a provider of end-of-life care, we have extensive experience with veterans. We witness every day veterans exhibiting clinical and psychosocial issues more often than other hospice patients. We want to make sure our veteran patients feel safe and secure, and that’s why it’s important to acknowledge veterans’ emotional concerns, not dismiss them. Even if they are only memories, they are very real to the person experiencing them.

When caring for veterans, it’s important to respond appropriately to challenging clinical issues while placing patients’ feelings of comfort and security first. Veteran volunteers, who are veterans themselves, can play a valuable role by listening, understanding and empathizing in ways even family members sometimes cannot.

Honoring Veterans at the End of Life

One method to connect with veterans and ensure their comfort and dignity is to provide them with information on their benefits. Identifying potential entitlements and coordinating with the Department of Veterans Affairs (VA), service members’ agencies and other local and state organizations can be extremely helpful to veterans and their families who may not realize how to acquire the benefits they have earned.

It is also key to remind veterans they have a support system and that they are valued. Some veterans returned from war without even receiving a “thank you for your service.” Giving veterans the recognition they deserve can make a world of difference.

Something small like offering veterans a recognition ceremony honoring their military service can go a long way. It can happen quietly, right at the bedside.

Additionally, the nonprofit Honor Flight Network sends veterans from around the country to the nation’s capital at no cost to visit and reflect at their war memorials, which is typically a very meaningful and special experience for veterans.

When veterans are unable to make the trip due to mobility issues or terminal illness, there are other options.

In some states, Flightless Honor Flights take place in a large room decorated by the community to resemble an airplane. With a video presentation played on a large screen, patients experience an Honor Flight without having to step foot on an actual plane.

In addition, Virtual Honor Flights are ideal for bedridden veterans. We’ve purchased virtual reality headsets with pre-recorded, 360-degree tours recorded by retired military tour guides, of the World War II Memorial, Korean War Memorial, Vietnam War Memorials, Women’s Memorial and Arlington National Cemetery.

Veteran patients and their families should know they are never alone. From challenging clinical symptoms to complicated benefits issues to a simple “thank you,” veterans should feel supported. It is never more important than at the end of life to show veterans unwavering honor and respect.

Complete Article ↪HERE↩!

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When Patients Can’t Be Cured:

Mass. Med Schools Teaching More End-Of-Life Care

By Kathleen Burge

On the second day of her geriatrics rotation, Jayme Mendelsohn buckles herself into the back seat of her professor’s blue minivan and rides south from the Boston University School of Medicine toward the house of a patient who cannot be cured.

As they drive through Roxbury, Dorchester and Mattapan, the professor, Dr. Megan Young, briefs Mendelsohn and another medical student about the elderly woman: She is 98, and diabetic, with increasing dementia.

She struggles to walk even a few steps, and can no longer make her way down the long cement stairway to her driveway. She has been housebound for nearly two years, and has a beloved dog who climbs up on her bed.

Young could have ordered tests, requiring hospital visits, to figure out why the patient had trouble walking. But that wasn’t what the woman wanted. “Really, what she wants to do is stay home and work on her word puzzles and not go to doctors’ appointments,” Young tells the students.

In her first three years of medical school, Mendelsohn studied blood and bones, cancer and heart failure and diabetes, learning to fix the many ways a human body can falter and break. But now she and the other fourth-year student, Nirupama Vellanki, are learning how to be doctors in a new age in health care, as clinicians increasingly grapple with how medicine can help patients with incurable illnesses.

Last year, all four medical schools in Massachusetts agreed to work together to improve the way they teach students to care for seriously ill patients, especially near the end of life. This fall, the schools are gathering data on what students are currently learning about end-of-life care, and some are beginning to change the way they teach.

Students at UMass Medical School are learning to treat gravely ill patients in the school’s simulation lab, examining “patients” — paid actors — and talking to them and their “relatives” about their worsening illnesses.

At Harvard Medical School, professors also hope to add lessons about end-of-life wishes to the school’s simulated teaching sessions.

At BU, students are visiting patients with a hospice nurse for the first time this year. Fourth-year students like Mendelsohn and Vellanki will be questioned on the principles of palliative care — a medical specialty that seeks to improve seriously ill patients’ quality of life — that they’ve learned on rotations like Young’s, part of the effort to measure what they’re learning.

“We are taught to solve problems, fix them and move on,” Mendelsohn says. “But that is not the answer all the time.”

In the United States, the richest country in the world, many of us live poorly at the end of our lives. We don’t talk enough with our doctors about what we want — what’s important to us — if we become seriously ill and cannot be cured. For instance, although most of us say we want to die at home, only about one-fourth of us do. And doctors have traditionally been given little training in how to talk with ill patients about dying.

“There’s a lot to be proud of in modern medicine,” says Dr. Jennifer Reidy, chief of the palliative care division at UMass Memorial Medical Center and an associate professor at UMass Medical School. “But there is a bit of a steamroller effect sometimes in health care. There is a momentum towards doing more because we can, and we know how to do it.”

The new end-of-life training for medical students grew from the Massachusetts Coalition for Serious Illness Care, a group created in 2016. Surgeon and writer Atul Gawande, one of the coalition’s co-founders, asked Harris Berman, dean of the Tufts University School of Medicine, if he would bring together the state’s medical schools to improve training in palliative care.

The other deans agreed. All of the schools had some teaching on palliative care, but believed they could do better.

“If we’re not teaching it, if we’re not testing it, the message is that it’s not part of their job,” says Kristen Schaefer, an assistant professor of medicine at Harvard Medical School. Instead, the professors at the four medical schools want to teach students early on how to help gravely ill patients, she said, so they understand: “This is part of what it means to be a doctor.”

The schools won’t adopt the same curricula — the medical schools vary in size, budget and curriculum — but they will train students in five basic elements of palliative care. Patients do not have to be dying to receive palliative care, which can start anytime after diagnosis, including during treatment.

Learning how to talk to seriously ill patients and their families lies at the heart of the curriculum changes. Students will be taught how to discuss not only the science of their patients’ illnesses but also their patients’ wishes and values, and help them create plans for treatment.

“These are extremely challenging conversations,” says UMass Medical’s Reidy. “They’re very emotional. There is a framework, a cognitive map, but ultimately it’s [like] jazz. It’s whatever’s in the moment.”

Students will be taught to anticipate strong emotions and how to talk to patients who are deeply sad or angry.

“Students are afraid that they’re going to say something wrong that could hurt patients and families,” says Schaefer, also a palliative care doctor at Dana-Farber Cancer Institute. “They feel worried that they’re going to cry themselves, that they’re not going to know what to do.”

The medical schools also hope to head off burnout, a serious problem for doctors, by teaching students to pay attention to their own emotions, and relaying coping strategies for working with dying patients.

‘Create A Good Death’

Young’s patient, Ellen “Nellie” White, lives in Hyde Park with her daughter, Christine. Young, a home care physician at Boston Medical Center, began treating her a year ago.

“So Mom, this is the doctor I told you about coming today,” Christine says, opening the door to her mother’s bedroom, just off the kitchen. Young and the two students trail behind her.

Ellen White, born nearly 99 years ago in Ireland, sits on an easy chair with a green crocheted blanket across her legs. Her gray hair is cut short. Her daughter moves a book of word puzzles from her mother’s lap onto a table.

White squints up at her visitors. “Let me put on my glasses so I can see you,” she says.

“My name is Jayme,” Mendelsohn says loudly, so White can hear her. “I want to know how you’re feeling today.”

“I’m feeling fine, thank God,” White says. “I have no complaints.”

“Is anything bothering you?”

“Nope.”

Mendelsohn asks her a few more questions. She turns to her professor.

“Dr. Young, is there anything else you want us to specifically chat about today?” she asks.

Young asks her to check White’s blood pressure and listen to her heart and lungs.

White’s blood pressure is excellent. Mendelsohn takes off her watch.

“Let me just check your pulse,” she says.

She lays a finger across White’s wrist and gazes at her watch.

“Am I alive?” White asks.

Mendelsohn, counting, doesn’t answer. A few seconds later, she tells Young the pulse is a little more than 100 beats per minute.

“You’re alive!” Young tells White.

“That’s good to know,” she says.

Vellanki gives White a flu shot. The doctor and students leave the house. Afterward, the medical students say these visits help them learn different purposes of medicine.

“It can be really important for a medical student to have that moment where your job right now is not to write 15 different notes and to do all these different things and to solve their hypertension,” Mendelsohn says. “Your job is to talk to the patient and see what they need. … There are lots of times in medicine where you can’t solve the problem because the problem is bigger than medicine.”

Vellanki says she’s learning that doctors can still help patients at the end of their lives.

“I think you can’t solve the problem of dying but you can create a good death,” she says. “And that’s something that I don’t remember being taught much in med school.”

Complete Article ↪HERE↩!

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The Art of Dying Well

It’s been nearly two years since Colorado passed the End-of-Life Options Act. How has the controversial law affected Centennial Staters, and how, exactly, does one plan for a good death?

By

Merely Mortals

This is a story about death.

About how we in the United States—and maybe to a slightly lesser degree, here in Colorado and the West—tend to separate ourselves, emotionally and physically, from both the ugliness and the beauty of our inevitable ends. We don’t like to think about dying. We don’t like to deal with dying. And we certainly don’t like to talk about dying. Maybe that’s because acknowledging that human bodies are ephemeral short-circuits American brains groomed to (illogically) hope for a different outcome. Perhaps it’s also because the moment death becomes part of the public discourse, as it has in the Centennial State over the past several years, things can get uncomfortably personal and wildly contentious.

“As a society, we don’t do a great job of talking about being mortal. My secret hope is that this [new law] prompts talks about all options with dying.”

When Coloradans (with an assist from Compassion & Choices, a national nonprofit committed to expanding end-of-life options) got Proposition 106, aka the Colorado End-of-Life Options Act, on the ballot in 2016, there was plenty of pushback—from the Archdiocese of Denver, advocacy groups for the disabled, hospice directors, hospital administrators, and more physicians than one might think. But on November 8, 64.9 percent of voters OK’d the access-to-medical-aid-in-dying measure, making Colorado the fifth jurisdiction to approve the practice. (Oregon, California, Montana, Washington, Hawaii, Vermont, and Washington, D.C., have or are planning to enact similar laws.) Not everyone was happy, but if there’s one thing both opponents and supporters of the legislation can (mostly) agree on, it’s that the surrounding debate at least got people thinking about a very important part of life: death.

“As a society, we don’t do a great job of talking about being mortal,” says Dr. Dan Handel, a palliative medicine physician and the director of the medical-aid-in-dying service at Denver Health. “My secret hope is that this [new law] prompts talks about all options with dying.” We want to help get those conversations started. In the following pages, we explore everything from how to access the rights afforded in the Colorado End-of-Life Options Act to how we should reshape the ways we think about, plan for, and manage death. Why? “We’re all going to die,” says Dr. Cory Carroll, a Fort Collins family practice physician. “But in America, we have no idea what death is.” Our goal is to help you plan for a good death—whatever that means to you.

Death’s Having a Moment

Colorado’s end-of-life options legislation isn’t the only way in which Coloradans are taking charge of their own deaths. Some Centennial Staters have begun contemplating their ends with the help of death doulas. —Meghan Rabbitt

As the nation’s baby boomers age, our country is approaching a new milestone: more gravestones. Over the next few decades, deaths in America are projected to hit a historic high—more than 3.6 million by 2037, which is one million more RIPs than in 2015, according to the U.S. Census Bureau. Here in Colorado, home to Boulder’s Conscious Dying Institute, there are a growing number of “death doulas” trained to help us cross over on our own terms.

Death doulas offer planning and emotional support to the dying and their loved ones, and since 2013, the Conscious Dying Institute has trained more than 750. Unlike doctors, nurses, hospice workers, and other palliative-care practitioners who treat the dying, death doulas don’t play a medical role. In much the same way that birth doulas help pregnant women develop and stick to birth plans, death doulas help their clients come up with arrangements for how they want to exit this life. That might mean talking about what projects feel important to finish (like writing that book) or helping someone make amends with estranged family members or friends or determining how much medication someone wants administered at the end. “When people are dying, they want to be heard,” says Nicole Matarazzo, a Boulder-based death doula. “If a doula is present, she’ll be able to fully show up for the person who’s dying—and model that presence for family members.”

Over the past year, the Conscious Dying Institute has seen a noticeable jump in the number of Coloradans using its directory of doulas and inquiring about training. When she started working in end-of-life care in 1998, founder Tarron Estes (pictured) says no one had heard of death doulas. Now she’s getting roughly 25 calls a week. “More people are getting comfortable talking about death,” Estes says. “In cities like Denver, there’s a willingness to talk about topics that are taboo in other areas of the country.” Medical aid in dying is, of course, a prime example.

That embrace of the end might be just another part of what is becoming known as the “death-positive movement.” More than 314,000 people have downloaded a free starter packet from the Conversation Project, a nonprofit that gets people talking about their end-of-life wishes. And more than 6,700 “death cafes,” where people gather to talk about death over tea and cake, have popped up around the nation, including several in Colorado. Ready to make a date with death? The Denver Metro Death Cafe’s next meeting is on October 20.

Knocking On A Death Doula’s Door

What to look for in an end-of-life guide.

1. Ask to see a certificate of education and research the organization that provided the doula’s training. Look for curricula that involve at least some in-person instruction. For example, the Conscious Dying Institute’s eight-day, on-site training portion includes lectures, writing exercises, demonstrations, and partner practices. It’s also split into a three-day session and a five-day session, with a 10-week internship requirement between each on-site phase.

2. Compare fees. Death doulas in Colorado charge about $25 to $125 an hour and may offer a sliding scale based on their clients’ financial means.

3. Pay attention to the doula’s listening skills. The last thing you want as you prepare to cross over is someone who hasn’t been hearing you all along.

Ink Your Legacy

If a good death includes making sure your family is cared for, one of the greatest favors you can do for your loved ones is to provide a clear path to all of your worldly possessions. Putting in the time—and paperwork—to plan for the dissemination of all your stuff can save your family months of headaches, heartaches, and contentious probate battles. Not sure what kind of estate planning documents you need? We spoke with Kevin Millard, a Denver-based estate planning attorney, to help you get started.

If you don’t you care about who gets your stuff…
Great; then you probably don’t need a will. If you don’t have a will, your stuff—cars, jewelry, artwork, etc.—goes to your closest relative(s) under what are known as “intestate succession laws” (the laws that govern how your stuff is divided after your death). The state maintains very specific equations for different scenarios. For instance, if you die with a spouse and children from a previous relationship, your spouse gets the first $150,000 of your intestate property plus half of the remaining balance, and the descendants get everything else. Or, if you die with a spouse and living parents, your partner gets the first $300,000 of your intestate property and three-quarters of anything over that. Your parents get

If you do care about who gets your stuff and some of your “stuff” is minor children…
At the very least, you need a guardian appointment document to determine who will care for your children after your death. Physical custody is different from managing any money you might have set aside for your children. You can name one person to manage the money and another to actually care for your children. Also, if your selected guardian doesn’t live where you do, he or she gets to decide whether or not your kids have to move.

If your most valuable stuff is not really “stuff” at all, but more like life insurance policies, 401(k) plans, bank accounts, etc…
Then you’ve probably already designated who gets what by appointing a beneficiary for those things. Anything with a beneficiary—life insurance policies, payable-upon-death bank accounts, retirement plans, or property held in joint tenancy (e.g., your house)—does not get distributed according to intestate succession laws (the laws that govern how your stuff is divided after your death if you don’t have a will). It goes to the listed beneficiary. However, you might want to consider also designating a durable financial power of attorney to manage all of your accounts in the event you become incapacitated before you die. Ditto for a medical power of attorney.

If your stuff is worth millions…
In addition to a will, you should consider a trust. This can protect your estate from being included in lawsuits if you’re sued, and it can also ease some of the estate tax burden on your heirs. But if you’re worth millions, then you probably already have people on retainer who’ve told you this.

If your stuff isn’t worth millions…
You need a will if you want to make life easier for your heirs. (In Colorado, any estate valued at more than $65,000 must go through probate court—a process that takes many months to finalize because you cannot close an estate here until six months after a death certificate has been issued, which can take several days or even weeks.) The general rule in Colorado is that a will must be signed by two witnesses to be valid. If you go through the trouble of having it notarized, it becomes a self-proving will, which means the court doesn’t have to track down the witnesses to certify its validity. You can also handwrite and sign your will; that’s known as a holographic will and does not require witnesses—but it does come with a lot of hand cramps.

My Father’s Final Gift

When it came to preparing for the end of his life, my father planned for the worst, knowing that would be best for me. —Jerilyn Forsythe

It was June in Arizona, and it was hot inside my dad’s kitchen. The whole place smelled musty, the way old cabins do, and I watched as a swath of sunlight coming through the window illuminated lazy plumes of dust. My thoughts felt as clouded and untethered as the drifting specks. I had flown in from Denver the day before and driven more than 100 miles from Phoenix to collect some of my father’s things and bring them to the hospital, where he lay in a medically induced coma.

It had all happened so fast. I’d received a midnight call from a neurosurgeon in Phoenix—the same one who had done a fairly routine surgery to mend a break in my dad’s cervical spine a few weeks earlier. Somehow, the physician said, my father had accidentally undone the surgery, leaving two screws and a metal plate floating in his neck. The doctor explained that he had operated emergently on my dad, who would be under a heavy fentanyl drip—and a halo—until he stabilized.

Although my parents had been divorced since I was two years old, my mother was there to help me that afternoon in Dad’s cabin. Between coaching me through decisions like which of his T-shirts to pack and whether or not I should bring his reading glasses, she happened upon a navy blue three-ring binder, with a cover page that read “Last Will and Testament, Power of Attorney & Living Will for Larry Forsythe,” in his bedroom.

He had never told me about the binder, but my name graced nearly every page within it. On a durable financial power of attorney. On a durable medical power of attorney. On a living will. And on his last will and testament. My typically nonconformist dad had prepared a collection of legal files that would become my bible in the ensuing months.

During the roughly 16 weeks he was hospitalized, I would reread, reference, fax, scan, copy, and email those documents—particularly the powers of attorney—countless times. I also thought, on nearly as many occasions, how fortunate I was that my dad, who probably struggled to pay for a law firm to draw up the papers, had done so just a year before he was unexpectedly admitted to the hospital. Without his wishes committed to paper, I know I would not have been able to fully and confidently make decisions on his behalf. But, navy blue binder in hand, I was empowered to speak with authority to doctors, nurses, bank executives, and even the cable company, which would not have stopped the monthly payments that were dwindling his already heartbreakingly low bank account had I not been designated his financial power of attorney.

I always thought that having a sick or dying loved one meant hospital visits and flowers and tears—all of which is true—but I spent far more time on the phone with medical professionals, financial institutions, and social workers than I did crying. I imagine all of that strife would have been magnified dramatically had we not found that binder.

My dad died a year ago this month. His passing brought more challenges for me, but for a long time after, I silently thanked him for having the foresight to visit that estate planning law firm, for considering what I’d go through when he was no longer here. It was one of the last—and best—gifts he ever gave me.

Process Oriented

Navigating the myriad steps to legally access medical-aid-in-dying drugs can be an arduous undertaking already. Some obstacles, though, are making it even more frustrating for terminally ill patients and their families.

Step No. 1: Determine Eligibility

For a person to be eligible to receive care under the law, he or she must be 18 years or older; a resident of Colorado; terminally ill with six months or less to live; acting voluntarily; mentally capable of making medical decisions; and physically able to self-administer and ingest the lethal medications. All of these requirements must be documented by the patient and confirmed by the patient’s physician, who must agree to prescribe the medication.

Procedural Glitch: Because the law allows individual physicians to opt out of prescribing medical-aid-in-dying drugs for any reason and because some hospital systems and hospices have—in a potentially illegal move—decided not to allow their doctors to prescribe the meds, it is sometimes difficult for patients to find physicians willing to assist them.

Step No. 2: Present Oral And Written Requests

An individual must ask his or her physician for access to a medical-aid-in-dying prescription a total of three times. Two of the requests must be oral, in person, and separated by 15 days. The third must be written and comply with the conditions set in the law (signed and dated by the patient; signed by two witnesses who attest that the patient is mentally capable of making medical decisions, acting voluntarily, and not being coerced by anyone).
Procedural Glitch: Although mandatory waiting periods are required in all jurisdictions with medical-aid-in-dying laws, these requirements are especially challenging for patients in small towns or rural areas, where there might not be a doctor willing to participate for 100 miles. For terminally ill patients, making two long road trips to present oral requests can be next to impossible.

Step No. 3: Get A Referral To A Consulting Physician

The law requires that once a patient’s attending physician has received the appropriate requests and determined the patient has a terminal illness with a prognosis of less than six months to live, the doctor must refer the patient to another physician, who must agree with the diagnosis and prognosis as well as confirm that the patient is mentally capable, acting voluntarily, and not being coerced.

Procedural Glitch: Once again, difficulties with finding a willing physician can cause lengthy wait times.

Step No. 4: Fill The Prescription At A Pharmacy

Colorado’s medical-aid-in-dying law doesn’t stipulate which drug a physician must prescribe. There are multiple options, which your doctor should discuss with you. Depending on your insurance coverage (Medicare, Medicaid, and many insurance companies do not cover the drugs), as well as which hospital system your doctor works in, getting the medication can be as simple as filling a script for anything else.

Procedural Glitch: Not every hospital system will allow its on-site pharmacies to fill the prescriptions—HealthOne, for example, doesn’t. Corporate pharmacies, like Walgreens, and grocery-store-based pharmacies often will not fill or do not have the capability to fill the prescriptions. What’s more, Colorado pharmacists are able to opt out of filling the prescription for moral or religious reasons. That leaves doctors and patients in search of places to obtain the drugs once all of the other requirements have been fulfilled.

Step No. 5: Self-Administer The Medications

Although the time and place are mostly up to the patient, if he or she does decide to take the life-ending drugs, he or she must be physically able to do so independent of anyone else. Physical capability is something patients must consider, especially if their conditions are progressing quickly and could ultimately render them incapable of, for example, swallowing the medications.

Procedural Glitch: Depending on the drug that is prescribed and the pharmacy that fills it, patients and/or their families are sometimes put in the position of having to prepare the medication before it can be administered. Breaking open 100 tiny pill capsules and pouring the powder into a liquid can be taxing even under less stressful circumstances.

Step No. 6: Wait For The End

In most cases, medical-aid-in-dying patients fall asleep within minutes of drinking the medication and die within one to three hours. The law encourages doctors to tell their patients to have someone present when they ingest the lethal drugs.

Procedural Glitch: Although most doctors who prescribe the medication do not participate in the death, it is worth asking your physician or your hospice care organization in advance about what to do in the minutes immediately after your loved one has died at home, as 78.6 percent of Coloradans who received prescriptions for life-ending meds under the law and subsequently died (whether they ingested the drugs or not) did in 2017. Someone with the correct credentials will need to pronounce death and fill out the form necessary for a death certificate (cause of death is the underlying terminal illness, not death by suicide) before a funeral home can pick up the body.

Who’s In & Who’s Out?

A short breakdown of metro-area hospitals’ and health systems’ stances.

Completely Out
SCL Health
Centura Health
VA Eastern
Colorado Health Care System
Craig Hospital

In, With Caveats
HealthOne
Boulder Community Health

All In
Denver Health
UCHealth
Kaiser Permanente Colorado

Alternative Endings

An Oregon nonprofit is Colorado’s best aid-in-dying resource.

Although Oregon’s Compassion & Choices is best known here as the organization that helped push Proposition 106 onto Colorado’s November 2016 ballot, the nation’s oldest end-of-life-options nonprofit didn’t abandon the Centennial State after the initiative passed. “First, we help states enact the laws,” says Compassion & Choices’ Kat West, “then we stick around to help with implementation and make sure it’s successful.”

In Colorado, the rollout has been fairly fluid. Perfect? Certainly not. Fortunately, Compassion & Choices has been trying to smooth some of the wrinkles in the system. The biggest help so far might be its website. The nonprofit keeps its online content updated with everything a Coloradan needs to know about the state’s End-of-Life Options Act. Of particular note: the Find Care tool, which lists clinics and health systems that have adopted supportive policies, since finding participating physicians, hospitals, and pharmacies is still challenging. “Patients don’t have the time or energy to figure this out on their own,” West says. “We do it for them.”

Hospice Hurdles

Why some local hospices aren’t as involved in Colorado’s aid-in-dying process as you’d expect.

Despite what you might have heard, hospice is not a place where one goes to be euthanized. “That misconception is out there,” says Nate Lamkin, president of Pathways hospice in Northern Colorado. “We don’t want to perpetuate the thought that we’re in the business of putting people down. That’s not what we do.” That long-standing myth of hospice care is, in part, why many Colorado hospices have declined—potentially in violation of state law—to fully participate in the End-of-Life Options Act.

By and large, the mission of hospice—which is not necessarily a place, but a palliative approach to managing life-limiting illness—has always been to relieve patient suffering and to enhance quality of life without hastening or postponing death, Lamkin explains. “This law kind of goes in opposition to that ethos,” he says. To that end, like many other hospices, Pathways has taken a stance of neutrality: Pathways physicians cannot prescribe the life-ending medication, but the staff will support their patients—by attending deaths, by helping with documentation—who choose the option. “We are not participating by not prescribing,” Lamkin says. “But it is the law of the land, and we fully support those who choose medical aid in dying.”

Pathways is not alone in its abridged participation. Other large Front Range hospice care providers, like the Denver Hospice, have also either taken an arm’s-length stance on the practice or opted out entirely. End-of-life options advocacy nonprofit Compassion & Choices regards this as willful noncompliance, which could leave hospice providers exposed to legal action, especially considering that 92.9 percent of Colorado’s patients who died following the reception of a prescription for aid-in-dying meds in 2017 were using hospice care to ameliorate symptoms and make their deaths as comfortable as possible. But, says Compassion & Choices spokesperson Jessie Koerner, when hospices abstain from fully supporting medical aid in dying, it strips away Coloradans’ rights—rights to which the terminally ill are legally entitled.

 

Filling More Than Just Prescriptions

After spending years at a chain pharmacy, Denverite Dan Scales opened his own shop in Uptown so he could better serve his customers. 5280 spoke with him about being one of the few pharmacists in Colorado meeting the needs of medical-aid-in-dying patients.

5280: Of the roughly 70 medical-aid-in-dying prescriptions written in Colorado in 2017, Scales Pharmacy filled approximately 22 of them. Why so many?
Dan Scales: As a pharmacist, you have no obligation to fill a script that’s against your moral code. So there are many pharmacists who won’t fill the drugs. Also, many chain pharmacies—like Walgreens—don’t mix compounds, which means they can’t make the drug cocktail a lot of physicians prescribe. That leaves independent pharmacies like ours.

You don’t have any objections to the state’s End-of-Life Options Act?
I really believe we kinda drop the ball at the end of life. We do a poor job of allowing people to pass with dignity. I won’t lie, though: After filling the first couple of prescriptions, I did feel like I helped kill that person. I needed a drink. But talking with the families after helps.

You follow up with your patients’ families?
Yes. We ask them to call us after their loved one has passed. We want to know how it went, how the drugs worked, how long it took, was everything peaceful? I’d say about 30 percent call us to offer feedback. It helps us know how to better help the next person. You have to understand, this is not a normal prescription; we talk with these people a lot before we even hand them the drugs. We get to know them.

If you could change one thing about the process, what would it be?
It’s frustrating that there’s not more pharmacy participation in our state. We’re having to mail medications to the Western Slope because people can’t find the services they need.

Final Destination

She couldn’t travel with him this time, but a Lakewood woman supported her husband’s decision to go anyway.

They met online, way back in the fuzzy dial-up days of 1999. J and Susan* weren’t old, exactly, but at 50 and 49, respectively, they had both previously been married. They quickly learned they had a lot in common. They were both introverts. Each had an interest in photography. And they loved to travel, especially to far-flung places, like Antarctica. After about two years of dating, they got married in a courthouse in Denver. For the next 17 years, they saw the world together and were, Susan says, “a really great team.”

The team’s toughest test began in fall 2017. Susan says she should’ve known something was wrong when she asked J if he wanted to go on an Asia-Pacific cruise and he balked. Upon reflection, Susan realized J likely hadn’t been feeling well. “That hesitation was a clue,” she says. The diagnosis, which came in January 2018, was a devastating one: stage 3-plus esophageal cancer. It was, as Susan puts it, “a cancer with no happy ending.”

It would also be, Susan knew, a terribly difficult situation for J to manage. He had never been able to stand not being healthy; she was certain he wouldn’t tolerate being truly sick. And esophageal cancer makes one very, very sick. The tumors make swallowing food difficult, if not impossible. As a result, some sufferers lose weight at an uncontrollable clip. They can also experience chest pain and nasty bouts of acid reflux. J knew he was dying—and that he didn’t want to go on living if he could no longer shower or go to the bathroom alone or be reasonably mobile. He broached the topic of medical aid in dying with Susan in February. “Honestly, I had already thought about it,” she says, “so I told him I thought it was a great idea.”

As a Kaiser Permanente Colorado patient, J had access to—and full coverage for—the life-ending drugs. The process, Susan says, was lengthy but seamless. J got a prescription for secobarbital and pre-dose meds; they arrived by courier to their house in April. Having the drugs in hand gave J some peace. He wasn’t quite ready, but he knew he was in control of his own death. He would know it was time when he began to feel like his throat would be too tight to swallow the drugs—or when he became unable to care for himself.

That time came in late June. He was weakening, and he knew it. Having decided on a date, J had one last steak dinner with his family on the night before his death. “He was actually able to get a few bites down,” Susan says. “He was also able to have a nice, not-too-teary goodbye with his stepchildren. It was wonderful.”

Although she was immeasurably sad when she woke the next day, Susan says seeing the relief on J’s face that morning reinforced for her why medical-aid-in-dying laws are so important. She knew it was unequivocally the right decision for him—a solo trip into the unknown, but he was ready for it. At noon on June 25, J sat down on the couch and drank the secobarbital mixed with orange juice. “Then he hugged me,” Susan says, “and he said, ‘It’s working’ and fell asleep one minute later. It was really perfect. He did not suffer. It was all just like he wanted it.”
*Names have been altered to protect the family’s privacy.

Drug Stories

A numerical look at medical-aid-in-dying meds.

$3,000 to $5,000: Cost for a lethal dose of Seconal (secobarbital), one of the drugs doctors can prescribe. The price for the same amount of medication was less than $200 in 2009; the drugmaker has increased the cost dramatically since then. Many insurance companies will not cover the life-ending medication.

4: Drugs that pharmacists compound to make a lower-priced alternative to Seconal. The mixture of diazepam, morphine, digoxin, and propranolol, which is reportedly just as effective as Seconal, costs closer to $500 (pre-dose medications included).

5: Ounces of solution (drugs in powder form that are dissolved in a liquid) a medical-aid-in-dying patient must ingest within about five to 10 minutes.

2: Pre-dose medications—haloperidol to calm nerves and decrease nausea and metoclopramide to act as an anti-vomiting agent—patients usually take about an hour before ingesting the fatal drugs.

10 to 20: Minutes it typically takes after the meds are ingested for a patient to fall asleep; death generally follows within one to three hours.

Uncomfortable Silence

Just because roughly 65 percent of voters approved Colorado’s End-of-Life Options Act in 2016 doesn’t mean Centennial Staters are completely at ease with the idea of the big sleep. Just ask these health care professionals and death-industry veterans.

“In a perfect world, I think one should be with family at the end. There are benefits of sitting with a dying person. Compassion means ‘to suffer with.’ Sometimes that suffering isn’t physical; it’s emotional. A lot of healing can happen at the end.”
—Dr. Michelle Stanford, pediatrician, Centennial

“If people’s existential needs and pain are addressed—things they need to talk to their doctors and family about—natural death can be a beautiful thing. It doesn’t have to be scary. In American society, we don’t talk about death and dying. It’s because we fear it. We are afraid of the anticipated pain, of having to be cared for. In other cultures, there is more family support and there is no thought of being a burden. This is a part of life, part of what should naturally happen.”
—Dr. Thomas Perille, internal medicine, Denver

“Doctors don’t die like our patients do. We restrict health care at the end of our lives. My colleagues don’t do the intensive care unit and prolonged death. We, as doctors, are not doing a good job helping patients with this part of their lives. Dying in a hospital is the worst thing ever. There is an amazing difference dying at home around friends and family.”
—Dr. Cory Carroll, family practice physician, Fort Collins

“Most people are unprepared for what needs to happen when a death occurs. Those who choose to lean toward the pain with meaningful ritual or ceremony are the ones I see months later who are moving through this process toward healing. The ones who think that grief is something that occurs between our ears are the ones who struggle the most. Sadly, we live in a society and a culture where grieving and the authentic expression of emotion is sometimes looked down upon.”
—John Horan, president and CEO of Horan & McConaty Funeral Service, Denver

“We only die once, so let’s do it right. When death happens, whether it’s our own or a loved one or someone we know, it’s not just their death that we’re acknowledging, but it’s life that we are all acknowledging. I think it’s helpful and healthy to honor death because in doing so, we are helping to celebrate life.”
—Brian Henderson, funeral celebrant, Denver

63 Percentage of Americans, 18 years or older, who die in hospitals and other institutional settings, like long-term care facilities and hospices. In 1949, however, statistics show that only 49.5 percent of deaths occurred in institutions. Because death in the home has become more uncommon, experts say, few Americans have direct experience with the dying process and that separation has, in part, led us to fear, misunderstand, and essentially ignore the end of life as an important stage of life itself.

Sources: Centers for Disease Control and Prevention; American Psychological Association

Another Shoulder To Lean On

Front Range support groups that can make bereavement more bearable. —Will Jarvis

Healthy Self. Healthy Life.

This two-therapist firm offers support sessions specifically for those in their 20s and 30s as well as an anticipatory grief gathering called Facing The Long Road. This latter group—which focuses on helping 19- to 36-year-olds manage the despair and caregiving duties that can come with having a parent with a terminal illness—zeroes in on a demographic whose busy lives often get in the way of their well-being. Cost: $35/session

The Compassionate Friends

The premise behind the Compassionate Friends, a 49-year-old international organization, is that only other bereaved parents can understand the pain of losing a child. Today, the group gathers parents, grandparents, and family members and encourages peer-to-peer healing in monthly sessions. Six Front Range chapters provide safe places for those struggling with loss to share coping mechanisms and ways to find a new normal.
Cost: Free

Judi’s House

Childhood traumas, such as losing a sibling or a close relative, can be especially challenging to overcome. That’s why this nonprofit, housed two blocks from City Park, has trained clinicians on staff to help both children and families dealing with grief. Its 10-week structured programs put kids in groups of five to 10 other children, and the organization provides a free dinner before each weekly meeting—giving anguished families one less thing to worry about.
Cost: Free

What Remains

While there are myriad ways to die, in Colorado there are only a few methods by which your body can (legally) be disposed: entombment, burial, cremation, or removal from the state. We spoke with Centennial State funeral homes and cemeteries to understand the options. Just remember: Colorado law says the written wishes of the deceased must be followed, so discuss what you want with your family ahead of time so they aren’t surprised.

Burial

Typical cost: From about $5,000 for a casket and full funeral service, plus about $5,000 for cemetery fees (plot, headstone, etc.)
What you need to know: In Colorado, a funeral home cannot move forward with a burial (or cremation or transportation across state lines) until a death certificate is on file with the county and state, which normally takes a few days. The funeral home will need information like social security numbers and the deceased’s mother’s maiden name to begin the process. Further, state law requires that if a body is not going to be buried or cremated within 24 hours, it must be either embalmed (using chemicals as a preservative) or refrigerated, so make sure your loved ones know what you prefer. Your family can opt to have your body prepared at a funeral home and then brought home for a viewing or service, though. Finally, federal law mandates that your family be given pricing details about caskets, cemetery fees, and the like before they make a decision, so they are prepared for the costs.

Cremation

Typical cost: From about $600 for transportation, refrigeration, and cremation; additional fees for urns, memorials, and/or funeral services
What you need to know: Choosing cremation does not preclude having a funeral; many people opt to have funeral services and then have the body cremated. (In this case, you’ll still need a casket, but you can rent one instead of purchasing it.) Once you’ve gone the ashes-to-ashes route, you can’t be scattered willy-nilly on federal land, in part because straight cremains are not healthy for plants. For example, your family will need to apply for a free permit—which stipulates how and where ashes can be spread—if you’d like to have your cremains placed inside Rocky Mountain National Park. The most popular national park in Colorado got more than 180 such requests last year.

Green Burial

Typical cost: From about $1,500
What you need to know: Only one Colorado cemetery (Crestone Cemetery) and handful of funeral homes (like Fort Collins’ Goes Funeral Care & Crematory) have applied for and been certified by the Green Burial Council. That doesn’t mean there aren’t various shades of “green” burial available throughout Colorado, though, at places such as Littleton’s Seven Stones Chatfield—Botanical Garden Cemetery and Lafayette’s the Natural Funeral. Among the greener ways to go: avoid embalming (so the harmful chemicals don’t seep into the ground upon decomposition); opt for a simple shroud or biodegradable casket; have your grave be dug by hand, instead of with machinery, which comes with a carbon footprint; or select a cemetery or cremation garden that uses environmentally friendlier plants for landscaping (for example, Seven Stones uses rhizomatous tall fescue for its meadow, which requires less water to maintain).

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