When a patient is initially referred to hospice care, usually by their physician or a case worker within the hospital, they are usually given a list of hospice agencies in their area to choose from. Sometimes these referral sources have a particular agency that they prefer and their recommendations shouldn’t be taken lightly; they are in position to see how well a particular agency cares for their patients.
However, as with any health care decision, you should be as informed as possible in order to know that you are making the best decision for you and your loved ones.
Why Choosing the Right Provider Matters
All hospice agencies work within the guidelines set forth by Medicare. The basic services they provide are the same across the board. This may leave you wondering why it would even matter which hospice agency you choose. There are differences, however, and they’re often tucked away in the small details.
It’s important to do a little research from the start to find where those differences lie.
Your first interaction with a hospice agency may happen over the phone after they receive your referral information and call you to set up an appointment. It may happen in the hospital setting when a representative from the agency comes to evaluate your loved one and offer information.
It may be initiated by you. Regardless of how your initial interaction takes place, there are some important facts to gather from the start.
The 5 Things to Consider When Choosing a Hospice Provider
First, the location of the staff is important. More on that below.
Hospice care can take place in the home, in a nursing home or in a hospital. Very few hospices have inpatient facilities, which means that most people receive hospice care via an independent agency. So, probably the most important question you can ask a hospice facility is related to the location of their nurses.
Just to clarify, it really makes no difference where the agency’s office is located, but it makes a huge difference where the nurses are located. I used to work on-call for a large hospice agency that covered three counties, over 200 square miles. On weekends, I covered the entire area with only the help of one LVN (licensed vocational nurse). Consequently, I would sometimes be with a patient in one county and get a call from another patient who had a crisis in another county who then had to wait two hours or more until I was able to get there.
Knowing how far away the on-call nurses live from you and how large of an area the nurses cover is essential to knowing how responsive they will be to your urgent needs. Keep in mind that some hospice agencies have multiple branch offices that could be 50 miles or more apart from each other. Make sure that if the agency your looking at has multiple branch offices that they also have a separate on-call nurse covering each one, and that the on-call nurse covering your area also lives in your area. If you have a crisis in the middle of the night or on the weekend, the last thing you want to do is wait two or more hours for help.
No. This is a choice made by patients who are already at the end of their life. A dying person will naturally lose interest in food and fluids and progressively become weaker. When the dying person decides to stop eating and drinking altogether, the process of progressive weakness leading to death occurs days to weeks sooner than would happen if the person were to continue eating and drinking.
Most people who choose to voluntarily stop eating and drinking do so to regain or maintain some control over their situation. Reasons people give for making this decision include the desire to avoid suffering, not to prolong the dying process and to take control over the circumstances surrounding their death.
What Kind of Patient Chooses to Stop Eating?
According to a study in the New England Journal of Medicine, which surveyedhospice nurses in Oregon who cared for patients who chose to voluntarily stop eating and drinking, the typical patient is elderly and considers himself to have poor quality of life.
Do Persons Who Choose to Stop Eating Suffer?
Overwhelming evidence says no. The same study in the New England Journal of Medicine found that 94 percent of nurses reported these patients’ deaths as peaceful.
The cessation of eating and drinking is a normal part of the dying process that typically occurs days to weeks before death. Once the body becomes mildly dehydrated, the brain releases endorphins which act as natural opioids, leading to euphoria and often decreased pain and discomfort. When a dying person voluntarily stops eating and drinking, the same process occurs, and they may report feeling better than when taking in nutrition.
Very few patients complain of feeling hungry or thirsty after the first couple of days. Mucous membranes may become dry as dehydration sets in, which is why some patients may want to moisten their mouth with drops of water for comfort.
When death by voluntarily stopping of eating and drinking was compared with death resulting from physician-assisted suicide, nurses reported that patients in the former group had less suffering and less pain, and were more at peace than those in the latter group. Nurses reported that both groups had a high quality of death, which sounds strange but means that their deaths proceeded with lower levels of pain and struggle.
How Long after Does Death Occur?
Once a person stops eating and drinking, death usually occurs within two weeks. The person may continue to take small amounts of water to swallow pills or moisten the mouth, and these small sips of fluids may prolong the dying process by a couple of days.
Is Voluntarily Stopping of Eating and Drinking Right for Me?
This is likely a question you never thought you’d ask. But if you are, be sure to discuss this with your physician. She will likely want to make sure that there aren’t treatable conditions, such as depression or untreated pain, that are contributing to your decision. She may also refer you to a social worker or a member of your religious organization (if applicable) to discuss this decision further.
No one can tell you whether you should voluntarily stop eating and drinking. Depending on your quality of life, amount of suffering and personal belief system, you can decide if this choice is right for you.
In the article she mentions that musician Ben Lee is also a death doula.
In case you’re not familiar with the term, a “doula” is traditionally someone who gives support to a woman during pregnancy and during and after the birth.
A death doula is someone who helps at the other end.
Here, Jaki Fisher, an Australian living in Singapore and studying to be a death doula, writes about her first experience witnessing death.
JENNY was the first person who asked me to be with her when she died.
A single woman in her early 50s with only a couple of nephews she was in touch with, Jenny was being cared for at the Assisi hospice in Singapore where I was a volunteer.
Jenny and I talked a lot about what might happen during the dying process and afterwards and it was then that she told me she wanted me to be with her as she died. I said I would do my very best to make this happen.
After several months, Jenny suddenly got quite a lot weaker but at the same time, something in her shifted. I noticed this and asked her if she felt different and she replied that she felt that she was coming to accept what was happening.
She was hardly eating but I remember that when she would have a sip of coffee, her eyes would light up at the taste and she would savour it with delight. And when she went into the garden, she would marvel at the sun and the wind — simple, present joys became very strong for her.
At the end, Jenny deteriorated rapidly. Her breathing changed and it was clear to the nursing staff that she would not live much longer.
Jenny was the first patient at the hospice to take part in an end of life vigilling program, No One Dies Alone (NODA). Based on one that began in the US, theoriginal was started by a nurse called Sandra Clarke who, after leaving a lonely old patient who begged her to stay, returned after her rounds to find he had died alone. She couldn’t forget this and eventually set up this no-fuss, volunteer-run program that has been implemented in many large hospitals across the US.
With most NODA programs in hospitals, volunteers are called to sit with dying people who are alone, estranged from their families or far away from loved ones when they are actively dying.
At Assisi, from the time an alone person is admitted to the hospital, the NODA volunteers become the family and visit them until they were actively dying and then sit in vigil during the last couple of days of their life — if that’s what they wanted.
Jaki has assembled a group of volunteers for her NODA program.
LAST MOMENTS
I started the vigil and took the first shift, setting up Jenny’s room with music and soft lights. Jenny was not conscious but I believe she knew I was there. I spoke to her and told her I was there to be with her as she had requested. I remember feeling nervous as I went into the room and initially I felt like I had to ‘do’ things, like read poems or inspiring verses.
Gradually, I took some time to ground and centre myself and create an atmosphere of awareness and presence, as we had learnt in our training. Then, I just focused on really being with Jenny, with no distractions.
I was aware that this was not a normal time, that something big was happening. Jenny had had a fever and when I first sat with her, she was moaning a little. This was unsettling but it also seemed quite normal — I was struck by how OK everything was, even though it was also very sad. In some weird way, as humans, we know how to do this end of life thing. Her breathing became very shallow and there were long pauses between each breath. I remember at one point, I thought that perhaps she had breathed her last breath when suddenly she took a big inhale and I jumped in fright. I sort of laughed to myself and thought that Jenny was again teaching me, reminding me that this was not about me, it was about Jenny and I just tried to relax and be with whatever was happening.
She passed away after only 90 minutes, very gently and softly while I was singing quietly to her. I couldn’t help but think that as usual, she didn’t want there to be a fuss.
We had promised her that she would not be alone when she died, and I was so grateful that we could fulfil that promise.
Being with someone when they die is powerful but it is not frightening. Many people make this comparison, but dying is a bit like labouring to give birth. There are urgent bits and struggling bits and then at the end, it all goes quiet. When Jenny actually died, I hardly even realised, it was so soft, a tender sigh.
After Jenny’s death, her nephew told me that her life had been quite hard and often lonely but that she had shared with him that she was amazed that in her last months of life, when things were really difficult, there was so much love and care in her life.
Jaki and NODA volunteers catch up to celebrate Jenny’s memory.
DEATH DOULAS
In the past two years, the NODA team at Assisi has accompanied more than 10 people during the last months of their lives and sat with them during their final hours. Many of the people we have accompanied lived hard, isolated, rough lives and I wish they could have been otherwise, but at least at the end part, they were loved with no expectations.
My dream is that people all over the world will adopt the NODA program in their own way so that we can all start to look after each other, especially at the end of life.
Nowadays, the profession of death doula is garnering a lot of interest. So am I a death doula? I am certainly interested in this area and I am heading off to San Francisco soon to take part in a death doula training and receive certification.
But I have my reservations about this sudden interest and the cynical part of me wonders if it is just the latest trendy thing, like being a yoga teacher was.
However, another part of me celebrates that perhaps this interest might be indicative of people wanting to face their mortality head on. I also like that death doulas are there to help people reclaim death as a natural part of life.
In the past, most people died at home — it was just another of the momentous life events — but in the past 50 years, we’ve pushed it away out of sight.
One thing I do want to say is that it is sometimes easy to romanticise dying but it’s not romantic — death is messy, draining, demanding, challenging, funny, heartbreaking, boring — everything … Death is often also really sad and a big loss, so I don’t really feel comfortable about making it a big celebration, unless of course it is!
I’m also wary of the idea of having a “good death” — that kind of creates a weird sort of pressure — like the one that is given to mums when they are striving to have a natural birth at all costs — our death will be what it will be.
However, what I do think is great is that people are talking about end of life and their choices. This conversation is so crucial and helpful and will make the end of life much clearer at a time when things are so rarely clear. However, once again, I wonder about being too attached to a plan — I think death would chuckle wryly at that idea.
To me, being with someone at the time of death is to become intimately exposed to not knowing — it asks us to be fully present and fully OK with whatever happens and not to impose a preconceived idea of what it should be like. To me, accompanying someone at the time of death is not really about doing anything, it’s about being able to hold and be there for whatever. We like to control everything in our lives but death does its own thing … it’s still the biggest mystery in our lives.
Jaki in her late 20s
‘AN UNNATURAL INTEREST IN DEATH’
I first volunteered at the Assisi Hospice not because of any great altruistic yearning to serve but because I knew that the people there had the inside story about dying. And I had an unnatural interest in death.
I fell into a black swirl of depression at 27 after I tried to fix my face. I went for some kind of noxious peel, a treatment that’s now probably banned. It’s kind of embarrassing — other people get depressed because they lose a loved one or suffer a terrible trauma — me, I thought I’d wrecked my face and down I went into the dark pit. (It’s fine now. Not quite the same but a perfectly serviceable face.)
I was lucky and got treatment and part of the therapy was to do something for others, to forget about “me” for a while. After much sulking and prevaricating I finally started volunteering at the Assisi Hospice.
Jaki with friends in Singapore.
I still remember the first time I went into the wards and saw my first “dying person” — how tiny and fragile, limbs like little birds, and yet how bright the eyes were.
I didn’t really speak Mandarin, Malay or Tamil (three of Singapore’s four official languages) and most of them didn’t speak English — the 4th one. And yet, those people didn’t just teach me about death, they taught me about life and living.
They taught me about bravery, love, tenacity, dignity and they didn’t seem to mind that I was a self-absorbed, self-destructive girl. They didn’t judge me and they let me see them in all their vulnerability and in this strange suspended time of life. Yes, they were dying but they were also very much alive.
I was supposed to be the do-gooder but they were the ones who taught me and showed me that life is all about moments and all about connection and all about love — and that’s about it.
I moved to the US to study Buddhism and then back to Melbourne but I never forgot the Assisi hospice. In 2012 after reading Being with Dying, a book about accompanying people at the end of life by Roshi Joan Halifax, I attended her Buddhist Chaplaincy program in Santa Fe.
Two years on, I was a Buddhist chaplain and also completed a unit of Clinical Pastoral Education at the Royal Melbourne Hospital.
But I was still volunteering at Assisi and as part of my chaplaincy project helped set up the NODA program.
JENNY’S LEGACY
Jenny spoke openly of her anger and frustration. She had accepted that she did not have long to live but she could not accept that she had to wait so long to die. This was another lesson for us. It was hard not to want to ‘fix’ this and make it better for her. At one time, she wondered what the point of her life was and expressed sadness that there were so many things she hadn’t done. I told her that from my point of view, she was teaching us so much and that she would live on so powerfully for us as our first NODA patient.
Jaki and fellow volunteers attend the funeral of Mr Loong, a man who had no friends or relatives in Singapore.
I asked her if we could talk about her after she had gone and whether we should change her
name if we did so. She was adamant — if it would help others gain a deeper understanding
about death, then we could certainly go ahead and use her full name with no changes.
We have been running this program for two years now and all of us involved can feel how it has the potential to touch us all and offer something that is greatly needed in
today’s highly medicalised and hurried world — genuine human companionship at the end of
life, especially for those who have no one to give it to them.
Jenny’s life was certainly not in vain. She lives on in the program and touches
every patient we serve. Because of her willingness to embrace NODA, more and more
people have not died alone — this is Jenny’s precious legacy.
The LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.
Bob DeMarce made a living as a funeral director, but he didn’t think much about his own mortality until he developed cancer. He soon learned it took more than being sick to prepare him for death.
DeMarce became one of hundreds of Minnesotans enrolled in a research program that prepares patients and families for the end of life. Conducted by Allina Health, the LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.
DeMarce already had plenty of doctors, care coordinators and rehab specialists to attend to his medical needs. LifeCourse gave him a “care guide” — a nonmedical counselor — who met with him and his family to help them set goals and provide support.
“Most people would hesitate to talk about this sort of thing,” said the 75-year-old DeMarce, who has had two bouts of lung cancer in addition to colon cancer. “With the different scares I had with cancer … We did want to get things straightened out.”
One goal of the program is to increase the number of patients with advance care directives, which research has shown can reduce the amount of unnecessary and often unwanted care at the end of life.
And the results were dramatic: Patients in the LifeCourse intervention group had fewer hospital inpatient days, fewer emergency room visits and less intensive care, compared with a control group that was tracked but did not work with care guides. About 85 percent completed a living will, compared with 30 percent in the control group.
But the program also aims to improve the quality of life at a time when chronically ill patients and their families often feel overwhelmed.
“The model we chose was one that would be very personal,” said Dr. Eric Anderson, a palliative care physician at Allina’s United Hospital and one of the LifeCourse leaders. “There is an intimate connection between talking about what matters most and having effective advanced directives.”
In some ways, the program turns the patient’s focus away from the end of life to the life that can be lived.
“People want to have meaning in their lives, that is more important than anything else,” said Anderson.
“The lived experience for these patients and for their families is simply better. In a number of ways they feel more holistically supported, less anxious and they are using services in a more rational and effective way.”
Minneapolis-based Allina is so encouraged by the program that it plans to develop it beyond the research phase and make it available to patients at eight Allina clinics by the end of this year. It is also talking with other organizations that might adopt the LifeCourse model.
“We’ve got such a large number of people who will be over the age of 65 who will face serious illness,” said Heather Britt, Allina’s director of applied research, who also worked on the project. “Systems like ours have to figure out what to do differently.”
Setting a course
LifeCourse began in 2012, targeting patients with heart failure, advanced cancers and dementia using Allina’s electronic medical record.
“We figured out who was sick enough with those diagnoses, and that took a fair amount of tweaking,” Anderson said.
Eventually, 450 patients were enrolled in the intervention group and about an equal number in a control group.
Care guides meet with patients and their families monthly.
“I am helping them identify what their goals would be and what resources that they might need,” said Judi Blomberg, an Allina care guide since 2013. A lawyer by training, Blomberg was drawn to a health care job because she wanted to help people dealing with crises and trauma.
“Feeling overwhelmed is something that happens when we hit those crisis points,” said Blomberg. “One of my jobs is to help people anticipate what is to come.”
Using a set of questionnaires and assessment tools, care guides help patients set a course to achieve what matters to them.
For some patients, it could be medical goals such as staying out of the nursing home, controlling blood sugar, walking without a cane or losing weight. But many patients also set goals outside the medical realm: doing volunteer work, spending more time with relatives or putting together photo albums.
Toes in the ocean
Bob DeMarce and his wife, Marilyn, who were among Blomberg’s first clients, decided their initial goal was to develop a living will.
“One thing that we were bringing to them was a framework where they can talk about difficult things together that had been hard for them to talk with each other about,” Blomberg said.
“It felt very natural,” said Marilyn DeMarce. “They made it not hard to sit down and have a conversation.”
“She kept us on point and made sure we got it done,” said Bob DeMarce, who does not want any extraordinary measures to prolong his life.
In addition to completing a living will, the DeMarces resumed traveling, a favorite pastime, last November with a trip to Palm Springs, Calif., including a side trip so Bob could stand in the ocean.
“That was big on my bucket list,” he said.
Although Bob DeMarce is now cancer-free, he did fall and break his femur about two years ago. The DeMarces were able to rely on their care guide for help.
“It really provides extra support. When you are in crisis you need as much help as you can [get],” said Marilyn DeMarce. “When you are living with this type of illness you know that at any moment your life could just change.”
“The interest they have shown in my health for whatever reason has been beneficial to me,” Bob DeMarce said. “It prepares you to live with being sick but it also helps you to get ready to die.”
Most 4-year-olds cannot grasp the concept of death. Most don’t have to, but Julianna Snow was forced to consider and reckon with her own mortality at that young age.
Julianna, of Washougal, Wash., was diagnosed with Charcot-Marie-Tooth Disease, which is one of the world’s most common inherited neurological disorders, according to the National Institutes of Health. It’s a progressive disease that damages the nerves affecting certain muscles. In most cases, it’s relegated to the arm and leg muscles, sometimes so mildly doctors don’t even find it upon examination. But there are many mutations of CMT, and symptoms range in severity.
Julianna’s case was one of the most severe.
The disease affected the muscles she needed for chewing and swallowing, then those needed for breathing. Her lungs would fill with mucus and cause pneumonia. When this happened, doctors would need to perform nasotracheal suctioning, an exceedingly painful procedure in which a tube is threaded through the nose and down the throat, past the gag reflex and into the lungs in order to remove dangerous mucus build-up.
Julianna despised it.
Most children scream and need to be restrained during the procedure, but Julianna was eventually too weak to do anything but cry, her nurse Diana Scolaro — who often performed the procedure — told CNN. And while most children can be sedated for the process, Julianna was too weak.
She remained conscious for each one, feeling every second of pain.
After each session, Scolaro would tell Julianna, “Rest now, baby. Maybe you can make it two hours before we have to do it again.”
Scolaro told CNN, “It’s not for the faint of heart to take what she took.”
Juliana’s condition continued to worsen. She eventually required a pressurized mask to pump oxygen into her lungs, which were too weak to do it themselves. She was fed through a tube inserted into her stomach. Her tiny body had grown too frail to fight off another bout of pneumonia, or even the common cold.
In October 2014, Dr. Sarah Green sat down with Julianna’s parents, neurologist Michelle Moon and former Air Force pilot Steve Snow, to have a difficult conversation. The next time Julianna got sick, she would likely die. If doctors managed to save her, her quality of life would almost certainly be poor.
It was a decision Moon and Snow could have made on their own, and they had — they were going to bring Julianna to the hospital if she got sick again.
But then they decided to ask Julianna.
Juilanna Snow.
As Moon explained on Anderson Cooper’s “AC360, “Julianna had to go through hundreds of rounds of nasotracheal suctioning. She knows exactly what that was. She was awake for every single one. I think she has a right. I think she has a say.”
So Moon sat her 4-year-old daughter down to have a series of the most heart-wrenching conversations a parent could imagine.
“Julianna, if you get sick again, do you want to go to the hospital again or stay home?” she asked her daughter in a conversation she blogged about on her personal blog and for the Mighty.
“Not the hospital,” the girl said.
In another conversation, Julianna asked whether her mother wanted her to get treatment. Moon asked what Julianna wanted.
“I hate NT. I hate the hospital,” she said.
“Right. So if you get sick again, you want to stay home,” her mom said. “But you know that probably means you will go to heaven, right?”
“Yes.”
“And it probably means that you will go to heaven by yourself, and Mommy will join you later.”
“But I won’t be alone,” Julianna replied.
“That’s right. You will not be alone.”
“Do some people go to heaven soon?” the 4-year-old asked.
“Yes. We just don’t know when we go to heaven,” her mom said. “Sometimes babies go to heaven. Sometimes really old people go to heaven.”
“Will Alex go to heaven with me?” Julianna asked, referring to her 6-year-old brother.
“Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone,” Moon told her. “Does that scare you?”
“No, heaven is good,” her daughter said. “But I don’t like dying.”
The two had many more conversations in this vein, Moon trying to ensure that, as much as possible, Julianna understood what dying means. Not only can most 4-year-olds not grasp the concept of death, most people can’t.
Still, a decision had to be made, and Julianna helped make one.
“I want to make it clear these are not Julianna’s decisions or choices,” Moon toldPeople. “They are Steve’s and my decisions, but we look to Julianna to guide us.”
Her parents respected her wishes.
“She made it clear that she doesn’t want to go through the hospital again,” Michelle told CNN. “So we had to let go of that plan because it was selfish.”
On Tuesday, Julianna died at 5 years old.
“Our sweet Julianna went to heaven today,” Moon wrote on the blog dedicated to her daughter. “I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together.”
Since Moon first posted on the Mighty, a blog about people with disabilities, and began her own blog, Julianna’s story has received national attention. CNN wrote a two-part series on the family, which was also featured on “AC360.” People magazine profiled the family. Even the Korean Broadcasting System traveled to Washington state to film Julianna for a Christmas Day documentary (below, but not in English).
As her story grew, so too did backlash in response to their decision.
“Your daughter sounds super smart but, please, don’t let her be anything like the decision-maker on this. I’m so grateful my parents heard my articulate little 4 year-old thoughts, factored them in, and didn’t confuse my strong verbal skills with an older emotional age,” wrote one commenter on the Mighty.
“The fact that she used leading questions does not sit well with me. As an attorney, I cannot even use those types of questions when cross examining. So, to present the questions in such a format induces the child in subtle prompts to answer in a particular way … furthermore, a four year old lacks the full capacity to decide their own” mortality, wrote another.
“I am so sorry for the lack of support you and your husband get from people who do not know you or young Julianna,” one wrote in response.
Even bioethicists weighed in.
New York University bioethics professor Arthur Caplan told CNN, “This doesn’t sit well with me. It makes me nervous. I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”
Others disagree.
“To say her experience is irrelevant doesn’t make any sense,” Chris Feudtner, director of the Department of Medical Ethics at the Children’s Hospital of Philadelphia said in response. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
Karla Langlois, a hospice nurse who worked with Julianna, agreed.
“I think she’s very capable of having input into the end of her life,” Langlois toldPeople. “I don’t know that it’s appropriate for every child but in this scenario it’s very appropriate.”
Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now.
I will have more to say later. For now, this is what is in my heart.
Today, I just want the world to know that there was a girl named Julianna.
She was a bright light. An old and delightful soul.
She loved love, and “everyone except for bad guys.”
She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.
She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)
Her mind was “always going.” It took us to a beautiful world without limits.
Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.
She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.
Today, she is free. Our sweet Julianna is finally free.
Please do not forget her. She lived, she was real, and she mattered.
I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.
Please remember our precious girl: she was Julianna.
Lonny Shavelson is consulting with doctors who have questions about California’s “End of Life Option Act.” He will also see patients after the law takes effect next week.
Few people have the unusual set of professional experiences that Lonny Shavelson does. He worked as an emergency room physician in Berkeley for years — while also working as a journalist. He has written several books and takes hauntingly beautiful photographs.
Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.
Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.
He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.
Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.
Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.
He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.
Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.
Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.
He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.
The wall of Lonny Shavelson’s office, lined with covers of the books he has written.
Shavelson decided he had to act, although he feels “quite guilty” about having been away from the issue while others pushed it forward.
“Can I just sit back and watch?” Shavelson told me from his cottage office in his backyard in Berkeley. “This is really an amazing opportunity to be part of establishing policy and initiating something in medicine. This is a major change … [that] very, very few people know anything about and how to do it.”
His website, Bay Area End of Life Options, went up in April, and he’s outlined the law at “grand rounds” at several Bay Area hospitals this spring. His practice will be focused on consulting not only with physicians whose patients request aid-in-dying, but also with patients themselves, including offering care to patients who choose him as their “attending End-of-Life physician,” as he indicates on his site.
Shavelson is adamant that this is “something that has to be done right.” To him, that means starting every patient encounter with a one-word question: “Why?”
“In fact, it’s the only initial approach that I think is acceptable. If somebody calls me and says, ‘I want to take the medication,’ my first question is, why? Let me talk to you about all the various alternatives and all the ways that we can think about this,” he predicts he will say.
Shavelson worries that patients may seek aid-in-dying because they are in pain, so first, he would like all his patients to be enrolled in hospice care.
“This can only work when you’re sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician. Then this is a rational decision. If you’re doing it otherwise, it’s because of lack of good care.”
California is the fifth state to legalize aid-in-dying, joining Oregon, Washington, Vermont and Montana. The option is very rarely used. For example, in 2014 in Oregon, 155 lethal prescriptions were written under the state’s law, and 105 people ultimately took the medicine and died, a death rate under this method of less than 0.5 percent.
Under the law, two doctors must agree that a mentally competent patient has six months or less to live. One of the patient-doctor meetings must be private, between only the patient and the physician, to ensure the patient is acting independently. Patients must be able to swallow the medication themselves and must state, in writing, within 48 hours before taking the medication, that they will do so.
Shavelson says he has been surprised by the lack of understanding he hears from some health care providers about the law. One person insisted the law was not taking effect this year; another asked how the law would benefit his patients with Alzheimer’s disease. To be clear, the law takes effect next week, and patients with dementia cannot access the law because they are not mentally competent.
The law does not mandate participation by any health care providers. Many physicians are “queasy” with the new law, Shavelson says he’s hearing, and are unwilling to prescribe to patients who request the lethal medication — even though they tell him they think the law is the right thing to do.
Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book “A Chosen Death.”
“My response to that is as health care providers, you might have been uncomfortable the first time you drew blood. You might have been uncomfortable the first time you took out somebody’s gall bladder,” he says. “If it’s a medical procedure you believe in and you believe it’s the patient’s right, then it’s your obligation to learn how to do it — and do it correctly.”
Shavelson said he predicts that many physicians who are initially reluctant to provide this option to their patients may become more comfortable after the law goes into effect and they see how it works.
Burt Presberg, an East Bay psychiatrist who works specifically with cancer patients and their families, said a talk he attended by Shavelson sparked a conversation at his practice. Yet, in my own talk with him, he peppered his statements with “on the other hand,” as he clearly wrestled with his own comfort level of handling patient requests.
Presberg spoke of his concern that patients suffer from clinical depression at the end of life, sometimes feeling they are a burden to family members who could “really push for the end of life to happen a little sooner than the patient themselves.” He spoke from his experience of successfully treating terminally ill patients with clinical depression.
“Depression is something that’s really undertreated,” Presberg said. “I often talk to people about the difference between normal sadness and normal grieving at the end of life.”
He said he believes Shavelson will be aware of treating depression, “but I do have concerns about other physicians,” he said. “On the other hand, I think it’s really good that this is an option.”
Shavelson says he’s already received a handful of calls from patients, but he’s mostly spent this time before the law takes effect talking to other physicians. He needs a consulting physician and a pharmacist that will accept prescriptions for the lethal dose of medicine.
Then he returns to the patient. “It’s important … that we’re moving forward,” he says. “It’s crucial that we do that because this is part of the rights of patient care to have a certain level of autonomy in how they die.”
To many of the doctors who feel “queasy” about moving to end a patient’s life, this type of care “isn’t so tangibly different to me,” Shavelson says, than other kinds of questions doctors address.
“I’m just one of those docs who sees dying as a process, and method of death is less important than making sure it’s a good death.”
A chalkboard “bucket list” stirred imaginations and got people talking at an Indianapolis festival designed to help make conversations about death easier.
In a sunny patch of grass in the middle of Indianapolis’ Crown Hill Cemetery, 45 people recently gathered around a large blackboard. The words “Before I Die, I Want To …” were stenciled on the board in bold white letters.
Sixty-two-year-old Tom Davis led us through the thousands of gravestones scattered across the cemetery. He’d been thinking about his life and death a lot in the previous few weeks, he told us. On March 22, he’d had a heart attack.
Davis said he originally planned to jot, “I want to believe people care about me.” But after his heart attack, he found he had something new to write: “I want to see my grandkids grow up.”
Others at the event grabbed a piece of chalk to write down their dreams, too, including some whimsical ones: Hold a sloth. Visit an active volcano. Finally see Star Wars.
The cemetery tour was part of the city’s Before I Die Festival, held in mid-April — the first festival of its kind in the U.S. The original one was held in Cardiff, Wales, in 2013, and the idea has since spread to the U.K., and now to Indianapolis.
The purpose of each gathering is to get people thinking ahead — about topics like what they want to accomplish in their remaining days, end-of-life care, funeral arrangements, wills, organ donation, good deaths and bad — and to spark conversations.
“This is an opportunity to begin to change the culture, to make it possible for people to think about and talk about death so it’s not a mystery,” said the festival’s organizer Lucia Wocial, a nurse ethicist at the Fairbanks Center for Medical Ethics in Indianapolis.
The festival included films, book discussions and death-related art. One exhibit at the Kurt Vonnegut Memorial Library had on display 61 pairs of boots, representing the fallen soldiers from Indiana who died at age 21 or younger.
These festivals grew out of a larger movement that includes Death Cafes, salon-like discussions of death that are held in dozens of cities around the country, and Before I Die walls — chalked lists of aspirational reflections that have now gone up in more than 1,000 neighborhoods around the world.
“Death has changed,” Wocial said. “Years ago people just died. Now death, in many cases, is an orchestrated event.”
Medicine has brought new ways to extend life, she says, forcing patients and families to make a lot of end-of-life decisions about things people may not have thought of in advance.
“You’re probably not just going to drop dead one day,” she said. “You or a family member will be faced with a decision: ‘I could have that surgery or this treatment.’ Who knew dying was so complicated?”
With that in mind, the festival organizers held a workshop on advance care planning, including how to write an advance directive, the document that tells physicians and hospitals what interventions, if any, you want them to make on your behalf if you’re terminally ill and can’t communicate your wishes. The document might also list a family member or friend you’ve designated to make decisions for you if you become incapacitated.
“If you have thought about it when you’re not in the midst of a crisis, the crisis will be better,” Wocial said. “Guaranteed.”
About a quarter of Medicare spending in the U.S. goes to end-of-life care. Bills that insurance doesn’t cover are usually left to the patients and their families to pay.
Jason Eberl, a medical ethicist from Marian University who spoke at the festival, said advance directives can address these financial issues, too. “People themselves, in their advance directive will say, ‘Look, I don’t want to drain my kids college savings or my wife’s retirement account, to go through one round of chemo when there’s only a 15 percent chance of remission. I’m not going to do that to them.’ ”
The festival also included tour of a cremation facility in downtown Indianapolis. There are a lot of options for disposing of human ashes, it turns out. You can place them in a biodegradable urn, for example, have them blown into glass — even, for a price, turn them into a diamond.
“It’s not inexpensive,” Eddie Beagles, vice president of Flanner and Buchanan, a chain of funeral homes in the Indianapolis area, told our tour group. “The last time I looked into it for a family, “it was about $10,000.”
A crematorium tour was part of the festival, too. Metal balls, pins, sockets and screws survive the fire of cremation.
“Really, when it comes to cremation, there’s always somebody coming up with a million dollar idea,” Beagles added. “If you can think of it, they can do it.”
Beagles showed us a pile of detritus from cremated human remains. He picked up a hip replacement — a hollow metal ball — then dropped it back into the ashes.
I’m a health reporter, so I know a fair amount about the things that could kill me, or are already killing me. But watching this piece of metal that used to be inside a human be tossed back onto the heap gave me pause. I’m thinking about what I might write on a “Before I Die” wall. I still don’t know — there are many things to do before I go. But I’m thinking about it a lot harder now.
