From Light to End of Life

For the first decade of her career, nurse Claire Riley did everything she could to help people survive. But when she moved to Boulder in 1980, her experiences took a slight curve when she started working at Boulder County Hospice. Suddenly, she was helping people to die. Naturally, the transition took some getting used to. After all, society has drilled into us the idea that death is something to be fearful of – a morbid experience. A bad thing. But, Riley found the beauty in end-of-life care and realized that, even as people wait to die, they are still fighting to better their lives.

“It doesn’t mean there isn’t healing happening just because someone isn’t going to survive,” Riley says. “It’s healing those last pieces of life.”

Through hospice, the dying and their families get the opportunity to work through those final healing stages at home. The Center for Disease Control and Prevention reported that 70 percent of Americans would prefer to eliminate the smell of anesthetic and the sterile environment of a hospital from their final days, preferring instead to pass away in comfortable surroundings. But only 25 percent of Americans get the opportunity to die in their home. Why? Because dying at home is no easy task.

Almost everyone eventually needs help with previously simple tasks such as bathing, dressing, getting around and even eating. They need help keeping track of the medications, and getting to doctor’s visits. Even for the most loving relative or friend, these responsibilities can start to take a toll physically, mentally and emotionally as they watch a loved one die. That’s when Riley is called in.

“To be invited into the home as an outsider into this family dynamic is a real special thing,” Riley says.

At one point, Riley was invited into the home of a coworker who was losing her battle with cancer. With treatment after treatment failing, it became clear that the woman was not going to live much longer, so she invited Boulder County Hospice to help ease her pain before she died.

Riley sat down with the family and discussed, in detail, the specifics of how she wanted her final months to play out. They also mapped out how she wanted to look, and what she wanted to wear when she died. They worked out what music she wanted to be playing and the people who would assist in the preparation of the body. But her coworker had a final unique request: she wanted to videotape goodbye messages to members of her family.

So Riley, with a team of nurses and social workers, pulled together to make sure she got this opportunity. For Riley, this wasn’t a mundane task piled onto a long list of requests. It was an important part of the patient’s final healing moments.

“We do everything we can to make these people comfortable, and if there’s something they want towards the end, we always do our best to help with that,” Riley says.

Boulder County Hospice was the first hospice care program in Colorado, established in 1976 just two years after the first hospice in the U.S. popped up in Connecticut. After many years, and a few name changes, the program is now TRU Community Care, the only non-profit hospice in Boulder County.

Most of a person’s healthcare costs are spent in the last few months of life. The cost of hospice can rise to upwards of $10,000. This is still a fraction of what it could cost to spend days or months in a hospital.

“Here we accept everyone,” says Annette Mainland, vice president and philanthropy director at TRU. “We want to make the option to die wherever someone feels comfortable available to anyone, regardless of payment.”

But people aren’t taking advantage of this. At TRU, 30 percent of patients die within the first week of care, and 59 percent die within the first month. Very rarely do patients spend the entire 180 days.

Most families and patients are in denial to the care they need. As they cling on to their lives, hospice seems like another way to admit defeat, Mainland says.

This reflects the attitude that people can often outsmart death. Of course, no one can. They are scared of the topic, and continue to treat death as taboo. Even hospice, which was originally coined as a specialty in “death and dying,” shifted its motto to “end of life” treatment, drilling in the emphasis on living, not dying.

It Takes a Village {Preparing for the Inevitable}

Robin Taylor was one of the few who realized the need for hospice early on, and reached out five months before her mother died. Taylor called TRU in 2012 after her mother, 94, suffered a stroke. Up until then, her health was fine and she was in assisted living.

Taylor was at her mother’s side as often as she could be, helping her cook, bathe, dress and just offering her company. But as her health deteriorated, the care became too much for Taylor to do on her own. Her mother’s will was strong. When she wanted something done, it had to be done. That mentality left Taylor nervous, and she realized she could no longer do it on her own.

“My mom was a real force of nature, she was adamant and determined in her ways, and it is an intensive effort to take care of her,” Taylor says. “It really did take a village.”

Taylor, who had friends who worked in hospice care, decided to call in TRU in February. The added help gave Taylor a bit more freedom, even though she was still there almost every day trying to help in any way.

During her mom’s final days, Taylor was more than 1,500 miles away in Florida visiting her granddaughter. When her mother fell, hospice was there to stabilize her. Taylor had no idea that it was the end. She thought everything would go back to normal, so she stayed a few more days in Florida.

Taylor’s mother died as she was driving home, only a few hours away from Boulder. Because of Taylor’s absence, a nurse sat with her mother as she took her final breaths.

Taylor didn’t know much about her mother’s final wishes, but as the days drew nearer Taylor was able to establish that she didn’t want to die alone, and she never wanted to struggle for breath.

“They made sure that her two requests were followed through; she didn’t die alone, and she never gasped for breath,” Taylor says. “The gift that they gave us was enormous, and I will never stop thanking them.”

Taylor, who lost her father a few months before her mother died, experienced two completely different losses. Her father, who was driving a car and using the computer 24 hours before he died, never needed extended or hospice care, whereas her mother did. Still, both deaths came as a shock.

“No matter how it happens, it’s always hard,” Taylor says. “I expected it with my mom, but not being there was just as hard.”

Taylor said she wished she had sat down with her parents before they passed to talk more about their final wishes. She tried a few times to sit down with them, but neither took her up on the offer, staying stubborn in their ways.

“I wish they would have taken me up on the offer so I could have been a bit more helpful in their final days,” Taylor says.

It’s stories such as Taylor’s that made an impact on Riley during her five-year stay in hospice care. In 1986, she left the hospice business but continued her work in the conscious living-dying movement. She moved on to a position at a hospital, advocating for patient rights, and serving on the ethical committee.

She watched as families butted heads with doctors and nurses, and sat by as families argued amongst each other trying to figure out what to do to keep their loved one alive. But that answer shouldn’t fall on the family, it should be up to the person dying. Riley realized this and decided to take action in her own life.

Twelve years ago, Riley went on a birthday vacation with her eight siblings and both parents. It was a rare occasion for the 10 of them to be in one place, making it an important and sentimental break from the real world.

Each day, two members of the family were recruited to prepare meals and supply some form of entertainment. So as a family they visited their high school, churches and old hangouts. One day they sat around and painted candleholders. But when it came time for Riley and her sister, who is also a nurse, to entertain they decided to sit down and have the family write out what they want their end-of-life plan to be.

“It was a little bit of a change of pace,” Riley says. “But it was necessary because my parents were heading for 80.”

So the family dispersed into pairs, and talked about what they want when the inevitable finally came. Once they all came back together, those who wanted to share could, but Riley and her siblings made their parents share so everyone could be on the same page. Through the activity they found out that their mother wanted food up until her dying breath, and that their father didn’t want to die in a hospital.

Five years after that vacation, Riley’s father died of natural causes. When the end was clear to the family, there was a temptation for them to try and beat death keeping him around a little while longer. Some people in the family suggested taking him to the hospital to keep him alive. But her father had been clear; he didn’t want to be converted one day only to die again in a week.

“We all just looked around and reminded each other of what we talked about on our last family vacation,” Riley says. So as a family they said their final goodbyes and let their father go.

The same struggle resurfaced when their mother died two years later. Some family members wanted to hold on to their mother, but at that point she had stopped eating.

“She just looked at us and said ‘I’m tired of lugging this body around,’” Riley says. “That is why it was so important for all of us to know her end of life wishes. No one wants to suffer.”

Those experiences motivated Riley to help other families. Her passion led her to become a part of The Conversation Project in Boulder County.

The Conversation Project advocates for families to sit down and talk about the end of life care they want. The problem is that most people aren’t talking. It’s another example of the avoidance of death that plagues most people, and it could be the reason that 70 percent of Americans are dying in hospitals or long-term care facilities when the majority prefer to die at home.

Constance Holden has dedicated the past few years to make sure families tackle the avoidance, just as Riley did 12 years ago. According to the Conversation Project, 90 percent of Americans believe it’s important to discuss their wishes for end-of-life care with loved ones, but only 30 percent follow through. And by the time families are willing to talk it’s too late.

This spoke to Holden. It also showed her that people need help when the time comes to have “the talk.”

So Holden, and cofounder Jean Abbott, put together a team of like-minded volunteers to help make the process simpler, however they could. They can do something as simple as sending out the proper paper work, or as intimate as sitting in on the conversation to help facilitate.

“I’ve seen so many families fall apart when decisions have to be made about death,” Holden says. “It adds a whole new level of discomfort and stress at an already complicated time. We are trying to take that away.”

The Difficult Decisions

The stress is something that Grant Marylander, a lawyer and volunteer chaplain for hospice, experienced first hand.

When his father was diagnosed with dementia, no one in the family had talked to him about his final wishes. When Marylander went to talk with his dad, the window of opportunity had already passed. His father was too far-gone to be engaged in the process.

A short time later, his father suffered a stroke. Maryland flew to be with his family, and learned that he was his father’s medical proxy. But the handwritten documents his father left were inconsistent.

Maryland didn’t know what to do, so he rallied his family and together they decided to put his father on palliative care.

“We are lucky that everyone was on the same page,” Maryland says. “We don’t know for sure if that is what dad wanted. We were all pretty sure, but we will never know.”

Maryland has since had many conversations with his mother about the care she would like to receive. He has also talked with his wife and children about the care he wants, and the care they would like receive.

“You never know when it’s your time,” he says.

Maryland, who now works closely with the Conversation Project, believes that the conversations people have before death not only helps families during the time of passing, but it also helps with the healing process. He may never know if the treatment his dad received was what he wanted, but it doesn’t keep him from healing.

“This year was the first time my dad didn’t call and sing ‘Happy Birthday’ to me,” Maryland says. “I know that it may sound weird, but I’m happy that I’m sad about it, because it reminds me of how important he was in my life, and how he touched me. It’s all part of the very human grieving process.”

Riley, unlike Maryland and Holden, has yet to talk with her children about her end of life choices. She had discussed it with her husband and assigned her best friend as her power of attorney, but like most she is avoiding it.

As part of the Conversation Project she often mediates other families’ conversations, just as she did 12 years ago. But sitting down with her family still scares Riley. The pieces just haven’t fallen into place yet.

“There are a lot of people, like me, who put it off until it becomes more urgent,” she says.

Besides, Riley is so busy helping others. During her long career, Riley has worked with a number of organizations in the area that are fighting to help people along their end of life journey. The connections she’s made has solidified the fact that she will have no problem living the remainder of her life in Boulder County.

“There are so many wonderful organizations geared towards the elderly,” Riley says. “I know I’m going to be in good hands when my time comes.”
One set of those helping hands belong to Ray Hockedy. Like Riley, Hockedy has been advocating end of life choices for 25 years, fighting the reticence that surrounds death.

After seeing some nasty deaths in his family, Hockedy made the conscious effort to helping others prepare. His passion pointed him to Compassion and Choices, which works with people to help them understand and set up the end of life care.

“I watched as two different people in my family suffered through their last days with us,” Hockedy says.

His father, who suffered an aneurism, was in and out of intensive care during his last couple of months. He continued to receive treatment, even when it became clear that he was not going to survive. There was no way for him to fully heal, but they continued to keep him alive.

He also watched his stepfather lay in a hospital bed with tubes intertwined with his body, connecting him to machines during his last months. His stepfather became brain dead after a bad fall and complicated brain surgery.

“He was there with us, but he really wasn’t,” Hockedy says. “He had no idea what was going on around him, and to me that isn’t living at all.”

But Compassion and Choices is also taking a direct response to diminish the pain and suffering felt during the final months.

Assisted suicide was pushed to the forefront of many minds, when 29-year-old, terminally ill Brittany Maynard took her own life under Oregon’s Death with Dignity Act. Oregon, along with New Mexico, Washington, Vermont and Montana, passed the law that allows medical professionals to prescribe a drug that slips a patient into sleep, letting them die peacefully whenever they seem fit.

Of course, that issue made national news when Detroit doctor Jack Kevorkian, crassly dubbed Dr. Death by the media, was convicted of second-degree murder in 1999 for assisting a patient’s voluntary euthanasia. Kevorkian, portrayed by Al Pacino in the 2010 film You Don’t Know Jack, claimed to have helped 130 people die with dignity, and he publicly championed the rights of terminal patients to receive suicide assistance from physicians.

“As a medical doctor, it is my duty to evaluate the situation with as much data as I can gather and as much expertise as I have and as much experience as I have to determine whether or not the wish of the patient is medically justified,” Kevorkian once said.

Hockedy, alongside a number of advocates, is fighting to legalize assisted suicide in Colorado.

“We currently have a law making it’s way up the chain,” Hockedy says. “There are two democrats in legislature who are co-sponsoring a death with dignity law in Colorado.”

Of course the group is met with resistance from a number of fundamentalists, churches and members of the disability community, who are worried a law like this would affect them as well. But in order to even qualify for the treatment, a person has to be terminally ill, similar to those going into hospice.

Let’s break it down.

Every patient must only have six months to live, and two doctors must weigh in on the matter to verify the patient has no chance of continued life. Once the decision has been made, the doctor prescribes the drug and the patient must take it on his or her own will, while in a stable state of mind. The person can decide to take the drug the next day, or they can throw it in the medicine cabinet and never look at it again. But the option will be there.

As ‘baby-boomers’ watch their aging parents become frailer and suffer, support in the “aid in dying” movement will grow further, Hockedy says. He’s not alone in his belief. In 2008, there wasn’t a single state that legalized assisted suicide. With five now, it’s apparent the movement is gaining traction.

“Seeing those deaths in my family, pointed me to three realizations,” Hockedy says. “People should be preparing for their own death, people should become educated about the options they have and ultimately that people should have a way to decide when to die instead of letting their illness kill them.”

Riley, who is now retired, will continue helping people and she has no plans to stray from the conscious living-dying community.

To keep her dedicated, Riley has formulated a way to look at her work. Scratch that. For her, it’s not work, it’s a hunger to continue giving strangers the amount of consideration and care she wants when her time eventually comes.

“You never disconnect,” Riley says. “It is really about being a part of someone’s end of life journey. I’ve learned that it’s about being there for someone, as opposed to doing something for them. Once you realize that, it makes everyone more comfortable and ready.”

Find Dignity Services

As people age their bodies start to shut down and the thin line of what is possible to do alone, and what they will eventually need assistance with starts to move more and more towards the latter. Some people may never need help, but there comes a time when most people do. For the majority Boulder has a number of programs and resources that offer help and guidance to 11 percent of the population who are 65 and older.