Stephanie and Brian Packer make lunch with their children, Brian, 11, Savannah, 5, Scarlett, 10, and Jacob, 8.
Stephanie Packer was 29 when she found out she had a terminal lung disease.
That’s the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Last fall, Maynard, of Northern California, opted to end her life with the help of a doctor in Oregon, where physician-assisted suicide is legal.
Maynard’s story continues to garner support for right-to-die legislation moving through legislatures in California and several other states. Now, Packer, another young California woman, is stepping up to share her story, but she wants people to draw a different conclusion.
On a recent spring afternoon, Packer, 32, is in her kitchen, preparing lunch with her four children.
“Do you want to help?” she asks the eager crowd of siblings gathered tightly around her at the stovetop.
“Yeah!” yells 5-year-old Savannah.
“I do!” says Jacob, who is 8.
Calmly managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying, but Packer cherishes these moments.
In 2012, after suffering a series of debilitating lung infections, she went to a doctor who diagnosed her with scleroderma. The autoimmune disease causes hardening of the skin and (in about one-third of cases) other organs. The doctor told Packer that it had settled in her lungs.
“And I said, ‘OK, what does this mean for me?’ ” she recalls. “And he said, ‘Well, with this condition you have about three years left to live.’ ”
Packer is on oxygen full time and she takes a slew of medications.
She says she has been diagnosed with a series of conditions linked to or associated with scleroderma, including lupus, gastroparesis, Raynaud’s phenomenon, interstitial cystitis and trigeminal neuralgia.
Packer’s various maladies have her in constant, sometimes excruciating pain, she says. She also can’t digest food properly and feels extremely fatigued almost all the time.
Some days, Packer says, are good. Others are marked by low energy and pain that only sleep can relieve.
“For my kids, I need to be able to control the pain because that’s what concerns them the most,” she says.
But Packer says physician-assisted suicide isn’t something she is considering.
“Wanting the pain to stop, wanting the humiliating side effects to go away — that’s absolutely natural,” Packer says. “I absolutely have been there and I still get there some days. But I don’t get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn’t have to be.”
She and husband Brian, 36, are devout Catholics. They agree with their church that doctors should never hasten death.
Stephanie Packer, 32, is terminally ill with the autoimmune disease scleroderma.
“We’re a faith-based family,” he says. “God put us here on earth and only God can take us away. And he has a master plan for us, and if suffering is part of that plan, which it seems to be, then so be it.”
They also believe if California legislation called SB 128 passes, it would create the potential for abuse. Pressure to end one’s life, they fear, could become a dangerous norm, especially in a world defined by high-cost medical care.
Instead of fatal medication, Stephanie says she hopes other terminally ill people consider existing palliative medicine and hospice care.
“Death can be beautiful and peaceful,” she says. “It’s a natural process that should be allowed to happen on its own.” Even, she says, when it poses uncomfortable challenges.
Brian has traded his full-time job at a lumber company for weekend handyman work so he can care for Stephanie and the children. The family downsized, moving into a two-bedroom apartment they share with their dog and two pet geckos.
Brian says life is good.
“I have four beautiful children. I get to spend so much more time with them than most head of households,” he says. “I get to spend more time with my wife than most husbands do.”
And it’s that kind of support — from family, friends and people in her community — that Stephanie says keeps her living in gratitude, even as she struggles with her terminal illness and the realization that she will not be there to see her children grow up.
“I know eventually that my lungs are going to give out, which will make my heart give out,” she says. “And I know that’s going to happen sooner than I would like — sooner than my family would like. But I’m not making that my focus. My focus is today.”
Stephanie says she is hoping for a double lung transplant, which could give her a few more years. In the meantime, this month marks three years since her doctor gave her three years to live. So every day, she says, is a blessing. Complete Article HERE!
A small brown bottle of liquid sits on the table, positioned between the two men.
The glass has no label, but both the patient and the doctor know what it holds.
Cancer sufferer Ray Godbold, left, meets Dr Rodney Syme, of Dying with Dignity Victoria. Photo: Justin McManus
The sick man calls it “control” and the urologist calls it “medication”, but the non-prescription substance has another name.
Nembutal was once a common sedative but is now more often used by vets to put pets to sleep. It is also the drug of choice for those who believe in the “right to die” – when physical pain and emotional misery become too much to bear.
Ray Godbold, 59, wipes his runny nose and explains what has led him from his home in Inverloch to this Philip Island holiday shack, surrounded by chittering birds perched in coastal banksias.
He has come to meet with Dr Rodney Syme, 79, the controversial vice-president of Dying with Dignity Victoria, to discuss the final stage of his life and his control over how those minutes unfold.
They first met here 12 months ago. Godbold had stage four gastroesophageal cancer, which had spread to his liver and lymph nodes. They kept in touch as the disease progressed. Now they are back.
Reasons for concern have been mounting. The cancer is taking more of his metabolism away, along with his appetite and energy. His pain and discomfort are growing, with dizzy spells and a few falls.
“I can tell – in myself – that the cancer will eventually…” he pauses, stopping to gather his thoughts. “I’m not as well as I have been.”
Both men know how his disease will progress from here.
Catastrophic events such as a heart attack, pulmonary arrest, embolism or severe bleeding are a risk. Liver failure and jaundice are a concern and, as the cancer spreads, cachexia or “wasting”.
“If I was here in my underwear, you would see the ravages of the cancer on my body,” says Godbold. “If I took my clothes off, you would say I was already cachetic.”
Ray Godbold was once a palliative care nurse – he is now dying from gastroesophageal cancer.
Godbold talks the talk because he spent 34 years as a nurse. As a midwife, he has been in the delivery room for the arrival of so many newborns, and he has also been present in homes and hospices as countless others have died in his specialist palliative care.
Godbold knows what a bad death looks like, and he does not want that for himself or his loved ones. And so he wants that little brown bottle on the table. He wants control.
He does not want to meet any new doctors or nurses in his final days. He does not want a drip of morphine and Midazolam to send him into a coma.
He does not want strangers making decisions about his death while he is unconscious, while his family sits for hours, days or even weeks – waiting for his last breath.
He has been positive up until now, but new metastases have come up and there is a creeping “existential despair” about how the end will come.
“My thoughts are starting to get a little bit darker, about death approaching,” he says. “I have had a psychological change.”
Rodney Syme nods. He points out that doctors cannot measure pain, breathlessness or tiredness. They cannot quantify despair and therefore must accept that only the patient can judge when suffering becomes insufferable.
“That’s medication for you – some Nembutal,” he says. “You need to take that by mouth, and you will have total control of that. It’s not my intention that you take it. I hope you don’t need to take it. But if you run into a brick wall, then that is what I sometimes call the key to the fire escape.”
If needed, this small bottle of Nembutal will be enough to end Ray Godbold’s life.
The two men shake hands and begin discussing the efficacy of what is, in effect, a black market substance. Nembutal is a “border controlled drug”, possession of which is a breach of law. Penalties range from imprisonment to fines of up to $825,000.
“If you take it,” says Dr Syme, “you will go to sleep relatively quickly and peacefully, and you will not wake up.”
If Godbold ingests the powerful barbiturate, he will be able to talk to his family for a few minutes, but the conversation will slow. He might yawn deeply, lying there in his bedroom. He will close his eyes at times, and drift into sleep.
In unconsciousness, the drug will slow his brain activity and nervous system. His heart rate will weaken. His breathing will become shallow. He will be dead in perhaps 20 minutes.
“Thank you,” he says. “It gives me great peace of mind to know that I’ve got it in my possession. I very much appreciate what you’re doing for me.”
What both men are doing is taking a stand. They are mounting a public challenge to current laws that deny people the right to take their own life with the help of a doctor, through medication that can assist their passing in a peaceful and reliable way.
Ray Godbold and Dr Rodney Syme are making a public stand on the “right to die” issue.
They expect a reaction. They want a debate – about what Dr Syme has already done for decades.
Paul Russell, director of HOPE, an organisation devoted to preventing euthanasia and assisted suicide, said it was “frustrating” that any doctor would supply patients with life-ending medication. “Euthanasia is never safe.”
One of his main arguments against “right to die” legislation is the inevitable “incremental extension” of those laws. In the Netherlands and Belgium, he says, people have been euthanised after psychiatric illnesses, botched sex change operations, or fear of going into a nursing home.
The story of Ray Godbold creates an “impetus for change”, he says, but equally there are other stories that should create “cause for pause or thought”.
In Victoria, it is a criminal offence to incite, aid or abet a suicide, with a maximum penalty of five years’ jail, yet no Victorian doctor has been charged with assisting suicide in the past 50 years.
Ray Godbold with his wife, Robyn. Both are nurses, and know what suffering looks like.
Dr Syme says he has been “frightened” to publicly reveal his work as it might get him into “deep trouble”, but says the time for hiding has passed.
State Parliament has rejected 16 euthanasia bills over the past 20 years, and although a new inquiry into end of life choices has been launched, Dr Syme feels the issue needs a push.
He is happy to make his actions known, and is even delivering an address on the subject to the annual conference of the Royal Australasian College of Physicians later this month.
Offering people this kind of control, he says, helps relieve angst and potentially extends life by removing anxiety about death. Then finally, as a last resort, medication can be a way out of a protracted and gruesome passing.
“I’ve set out to challenge whether what I am doing here publicly is a criminal offence,” he says. “I believe I can argue that it’s not – that it’s good palliative medicine.”
Ray Godbold at home in Inverloch, tending the garden in readiness for winter.
Ray Godbold is a believer in palliative care. He knows it may be enough for him, as it was for right to die campaigner Peter Short.
But he does not want to be forced to rely on their restrictive processes when the end of his “mortal cycle” is near – when he believes he should have a choice.
“When it comes to the end of my life,” Godbold says, “my trust is with myself.”
In the meantime, he is painting the house, bedding down the garden for winter, and making sure there are no odd jobs left behind when he is gone.
He wants to be ready for that moment, in every way.
“I want to gather my family around me and just say goodbye, and go my way – not your way,” he says. “Now’s the time.” Complete Article HERE!
More than a dozen states, plus the District of Columbia, are considering controversial medically assisted death legislation this year.
The laws would allow mentally fit, terminally ill patients age 18 and older whose doctors say they have six months or less to live to request lethal drugs.
Oregon was the first state to implement its Death with Dignity Act in 1997 after voters approved the law in 1994, and four other states — Montana, New Mexico, Vermont and Washington — now allow for medically assisted death.
As of April 10, at least another 25 states have considered death with dignity bills, according to Compassion & Choices, a Denver-based nonprofit organization that advocates for these laws. Some of those bills already have died in committee.
“The movement has reached a threshold where it is unstoppable,” said President Barbara Coombs of Compassion & Choices, who was also chief petitioner for the Oregon Death with Dignity Act.
The issue of medically assisted death rose to prominence last year with the case of Brittany Maynard, 29, who was told she had six months to live after being diagnosed with brain cancer. Maynard was a strong advocate for Death with Dignity, and when she learned of her grim prognosis, she moved from her home state of California to Oregon, where terminally ill patients are allowed to end their own lives.
“I would not tell anyone else that he or she should choose death with dignity,” she wrote in an op-ed on CNN.com. “My question is: Who has the right to tell me that I don’t deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?”
Maynard died Nov. 1 after taking a lethal prescription provided to her by a doctor under Oregon’s death-with-dignity law.
Many states have proposed these bills, which some advocates call right-to-die legislation, after Maynard’s eventual death in November of last year, but so far none of them have passed.
Coombs, whose organization worked with Maynard to “help carry her voice and her message,” credited Maynard’s advocacy with helping put the issue in the public eye, to the point where legislators are hearing from their constituents that this is a pressing need.
“Brittany Maynard’s death … made it a political issue for younger people, not just older people,” said Arthur Caplan, founding director of the Division of Medical Ethics at New York University Langone Medical Center’s Department of Population Health.
The issue has sparked debate with opponents who argue that, given the risk of mistakes or abuse, medically assisted death laws present more dangers than benefits.
“There is a deadly mix when you combine our broken, profit-driven health care system with legalizing assisted suicide,” said Marilyn Golden, a senior policy analyst with the Disability Rights Education and Defense Fund.
The possibility of patients being financially or emotionally pressured into a decision to end their own lives is also a major concern, Golden said.
“Assisted suicide automatically becomes the cheapest [treatment] option,” Golden said. “They [patients] are being steered toward hastening their deaths.”
Golden pointed out that the safeguards in place with the legislation in Oregon do not address certain issues, such as doctor shopping, where patients whose physician deems them unfit for lethal medication seek treatment with other doctors who might give them a more favorable answer.
The fact that the legislation does not require the presence of objective witnesses could mean that patients are not willingly self-administering the medication as the law intends, Golden said. It opens up the possibility of elder abuse by heirs or abuse caretakers.
Coombs said the Oregon law has functioned as it was meant to and even has led to unexpected benefits in improving quality of life for terminally ill patients.
“I think the movement is a good thing,” Caplan said. “It has proven to be effective and not abused in Oregon and Washington.”
Many of the people who request the medication never end up taking it, though having it allows them to have a sense of security, Caplan said.
With proper checks and balances, the law should not be problematic, he said.
“Between one-third and one-half of patients never take the medication,” Coombs said. “They just derive a lot of peace of mind from having the option.”
Maynard, who received her prescription in May last year, held onto it until November, once she had decided that the suffering had gotten to be too much, she said.
In Oregon between 1997 and 2014, 1,327 people were prescribed lethal medication, 859 of whom died from ingesting the medication, according to the latest data from the Oregon Public Health Division’s yearly report. In Washington state, 549 people received prescriptions under the state’s Death with Dignity Act from 2009 to 2013; 525 of them died, though not all of these deaths are confirmed to have been the result of ingesting the medication, the state Department of Health’s latest report states.
Both Oregon and Washington found that participants had three major concerns: loss of autonomy, diminishing ability to engage in the activities that make life enjoyable, and loss of dignity. Meanwhile, only about a third of patients in both states were concerned about inadequate pain control.
“It’s not as simple as pain,” Coombs said. “Everyone gets to identify their own definition of suffering.”
Similar bills repeatedly have failed to pass either as ballot initiatives or as legislative measures in other states. More than 140 similar proposals in 27 states have failed since 1994, according to the Patients Rights Council. Complete Article HERE!
Alternatives to institutions emerge in caring for dying people and their families
by Shannon Firth
When Lee Hoyt was in college her parents died — first her mother and then her father. Hoyt, now a retired teacher and volunteer at Gilchrist Hospice in central Maryland, said the losses were exacerbated by the abrupt separation from her parents.
“They were whisked away by the funeral home. It was done the conventional way, and no one talked to me about it,” she said.
Julie Lanoi, RN, a mental health clinician, hospice nurse and vice president of New Hampshire Funeral Resources Education and Advocacy (FREA) felt similarly about her own experience.
As a full time caregiver for both of her grandparents, Lanoi was upset by how quickly her grandmother’s body was taken from her when she died.
“It feels unnatural to me to have that distancing from the experience so quickly,” said Lanoi. “The person that you have loved your whole life is all of a sudden, they’re just gone out of the room, and you never see them again. Or you never see them again in that natural state.”
At the time, Lanoi was resigned to the process. “And then I realized there was another way to do it.”
Lanoi came across an article online on home funerals and “conscious dying.” The concept of “conscious dying” encourages conversation and decision-making, so that patients and families can make death and the bereavement process more meaningful and more intimate.
Both women are now what are variously called death doulas, death midwives, midwives to the soul, transition guides, psychopomps, and thanadoulas. They believe that there should be alternatives to institutions for people at the end of life, and to conventional afterlife care — that is, funerals — as well.
Interest in home funerals seems to be growing, particularly among providers. According to the National Home Funeral Alliance, 23% of its members are also medical providers — this includes doctors, nurses, and physical therapists. An additional 22.5% are spiritual care and social workers.
Still, said the group’s president, Lee Webster, “We are a death-denying a culture.”
“We’re the only creatures in existence that know we have a finite end,” she continued. “Not discussing it is ludicrous.”
The goal of home funeral guides is to walk patients and their families through the after-death process.
“We all want to feel that we’re not alone.”
Coaches, Fixers, Handholders
The role of death doulas or death and dying guides, as the Alliance calls them, is simple but important.
Patients will call on these individuals to help them write advanced directives, to plan wakes and funerals, and to help prepare their friends and family for what is about to happen. These guides can also help dying patients with the emotional and psychological work of forgiving injuries. “So that you can have a more peaceful ending to your relationships,” Hoyt said.
Many end-of-life guides will sit with families and offer support as patients are dying. Hoyt has also been called to the bedside of patients who have already died. She sat beside one man who had been dead 5 hours, while the family drove to the hospital. “The daughter was very grateful someone was there and that he hadn’t been alone,” she said.
After death, instead of having the patient’s body removed by a professional, Hoyt coaches family members in how to wash the body, properly rinse the mouth, shut the jaw, and dress him or her. It’s legal in all states for families to bathe a loved one, even after death, she said.
If the patient is in a hospital or nursing home, Hoyt can help families to complete the legal forms that would allow the family to bring a loved one home, if they wish to.
(Nine states mandate that families must engage with funeral homes. Webster’s group is actively lobbying to change this.)
While Hoyt is a volunteer, many guides and educators are paid for their work.
Jerrigrace Lyons, founder and director at Final Passages, in Sebastopol, Calif., charges an education fee to families of about $1,500 for the work she does over 3 or 4 days.
“I’m always willing to negotiate if people have a hardship with finances,” she said.
Although there is no legal license for death and dying guides, Lyons offers certification in end-of-life training. She conducts in-services at hospitals and sells guidebooks on end-of-life-care and occasionally speaks to medical students at universities.
Hoyt, who received her certification from Lyons, said, “The impetus for the movement in the beginning was healing, the really healing benefits of continuing to be engaged with the care, [and] providing a continuum of care for your loved one after death.”
The reason is obvious. “It keeps you busy and keeps you engaged in doing something that you know is very productive. It’s your final act of love,” she added.
While Hoyt could not rewrite the tragic experience of losing her parents, she was able to support the family of a close friend through her death and funeral process.
Hoyt remembers a house, filled with music, wind-chimes, and bird sounds. The windows were all open and the breeze blew into every room. Her friend lay in her bed barefoot in a favorite coat, under a giant pine bough. Then the family carried her friend in a seagrass casket strewn with lavender to a van that brought her to a burial site, where family and friends threw flowers into the air over her friends’ body.
“It was the most natural ritual that I’ve ever been a part of,” she said.
Guidance at a Distance
Lanoi’s role is to educate families so they can conduct patient-centered and family-directed funerals. She speaks with caregivers and relatives over the phone and holds workshops to share concrete practical and legal steps involved in the process.
She also connects families with traditional and nontraditional resources related to after-death options.
Lanoi said home funerals are not as unconventional as most people think.
“This is the way this was always handled for centuries and centuries and centuries,” she said.
“I think people have a fear that the body’s going to be decomposing before their eyes and it’s just, that’s not what happens.”
Conscious dying slows down the process and allows families to actively grieve their loss instead of setting themselves apart from it, she said. Many families of hospice patients have been bathing, toileting, dressing, and caring for their loved ones for years. That this should abruptly end because a person has died, and that an individual’s care be passed over to a stranger, seems odd to her.
“In caring for the body of the loved one for the last time, in washing the body for the last time, in having them be present with you after the death for a period of hours, it’s a very different experience than the ‘detaching from’ that we conventionally do, and we can miss out on some important emotional experiences,” she added.
When she speaks about her work with other medical colleagues, Lanoi said, “most of the time it’s been ‘Oh, I didn’t know you could do that.’ Some will even say, ‘That’s what I want.'”
When providers ask about the risk of infection, she advises home funeral guides to tell families to use the same universal precautions they would as when a patient was alive. Providers will also ask about their own liabilities. Once a death certificate is signed, “the medical world’s job is over,” she said. Complete Article HERE!
Dan Swangard, a 48-year-old physician from San Francisco, was diagnosed in 2013 with a rare form of metastatic cancer.
Dan Swangard knows what death looks like.
As a physician, he has seen patients die in hospitals, hooked to morphine drips and overcome with anxiety. He has watched dying drag on for weeks or months as terrified relatives stand by helplessly.
Recently, however, his thoughts about how seriously ill people die have become personal. Swangard was diagnosed in 2013 with a rare form of metastatic cancer.
To remove the cancer, surgeons took out parts of his pancreas and liver, as well as his entire spleen and gallbladder. The operation was successful but Swangard, 48, knows there’s a strong chance the disease will return. And if he gets to a point where there’s nothing more medicine can do, he wants to be able to control when and how his life ends.
“It’s very real for me,” said Swangard, who lives in Bolinas, Calif. “This could be my own issue a year from now.”
That’s one of the reasons Swangard joined a California lawsuit last month seeking to let doctors prescribe lethal medications to certain patients who want to hasten death. If he were given only months to live, Swangard said, he can’t say for certain whether he would take them.
“But I want to be able to make that choice,” he said.
The right-to-die movement has gained renewed momentum in California and around the nation following the highly publicized death of an East Bay woman with brain cancer. Brittany Maynard, 29, moved to Oregon to take advantage of its “Death with Dignity” law and died in November after taking a fatal dose of barbiturates prescribed by her doctor.
The California lawsuit asks the court to protect physicians from liability if they prescribe lethal medications to patients who are both terminally ill and mentally competent to decide their fate.
The lawsuit argues that while it is against the law in California for anyone to assist in another’s suicide, these cases are not suicides. Rather, the suit argues, they are choices by a dying person on how his or her life should end and decisions about one’s own body protected under the state constitution.
Separately, two California state senators have proposed a bill that would allow doctors to prescribe lethal medication to certain terminally ill adults.
Three states — Oregon, Washington and Vermont — already have laws allowing physician-assisted deaths. Courts in New Mexico and Montana also have ruled that aid in dying is legal, and a suit was also recently filed in New York.
Legislation is pending in several other states. Kathryn Tucker, an attorney on several of the court cases, is also spearheading the California lawsuit. This time, she and her legal team decided to include among the plaintiffs two doctors with life-threatening illnesses, Swangard and a retired San Francisco obstetrician.
Physicians “have a very deep and broad understanding about what the journey to death can be like,” said Tucker, executive director of the Disability Rights Legal Center. “The curtain is pulled back. For lay people, death is much more mysterious.”
Historically, doctors have been some of the most vocal critics of assisted suicide, also called aid-in-dying. The American Medical Association still says that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer.” Similarly, though it hasn’t taken a position on currently proposed legislation, the California Medical Association has said that helping patients die conflicts with doctors’ commitment to do no harm. “It is the physicians’ job to take care of the patient and that is amplified when that patient is most sick,” said spokeswoman Molly Weedn.
But a recent survey of 21,000 doctors in the U.S. and Europe shows views may be shifting. According to Medscape, the organization that did the survey, 54 percent of American doctors support assisted suicide, up from 46 percent four years earlier.
Swangard is among those who believe that taking care of patients means letting them choose how their lives should end. That’s not the same as killing patients or facilitating suicide, he said.
Swangard completed his medical residency in San Francisco in the middle of the AIDS crisis; young men were dying all around him. Throughout his career as an internal medicine doctor, a hospice volunteer and now an anesthesiologist, he has become frustrated with how the medical system handles death. Doctors spend so much time trying to extend life that few focus on what patients want in their last days, he said.
“I don’t think we know how to die,” he said. “We fight tooth and nail to keep that from happening.”
Swangard’s own illness was discovered in early 2013 during a long overdue check-up. He hadn’t been worried about his health — he was obsessed with fitness, swimming regularly and seeing a trainer twice a week. But when the doctor pressed on Swangard’s stomach, he felt a mango-sized mass.
He had a visceral feeling, he said, “something bad was happening.”
Within a week, a surgeon found a neuroendocrine tumor in the pancreas and metastasis in the liver. It was the same cancer that took Steve Jobs’ life — one that doesn’t generally respond to chemotherapy or radiation. “My fears became real,” he said.
The doctors told him they believed they got all the cancerous cells. But Swangard was tormented by questions: Am I going to be alive in a year? Is my cancer going to come back?
“I wasn’t sleeping, I wasn’t exercising, I was marinating in my own sadness and fear of what this all meant,” he said. “I thought, ‘This is going to kill me.'”
Since his diagnosis, Swangard said he has had a greater understanding of his patients’ struggles. Occasionally, he holds their hands and tells them he has been where they are.
Earlier this year, a physician friend asked him if he’d be willing to join the California case. Swangard didn’t hesitate. He didn’t go into medicine to help dying people linger and wants to help change that approach — for his patients and for himself.
When he dies, Swangard said, he wants to be surrounded by people he loves. He doesn’t want to be in a drug-induced haze, nor consumed by worry about what’s next. He wants to be able to say goodbye.
“It is a little bit of a blessing to know how I might die,” he said. “I don’t think a lot of patients have insight into what to expect.”
These days, he wears a Buddhist prayer bracelet, a reminder to focus on the present. He cut his work hours, swims as often as he can and meditates regularly. At home, he stares out at the ocean, often watching dolphins pass by. He makes every effort to stay calm and healthy.
He is in remission but he knows that what happens with the cancer is largely outside his control. An MRI last year showed a small lesion in his liver, which doctors are watching closely.
“It’s this big unknown,” he said.
Dr. Robert Liner, a fellow plaintiff who only recently met Swangard, lives with the same uncertainty.
On his 69th birthday in May 2013, the retired obstetrician had a bad cough. He felt tired and short of breath. His wife took him to the hospital, where doctors discovered malignant masses on his kidneys — advanced-stage lymphoma.
After radiation and chemotherapy, the tumors shrank. He also is in remission. But if the cancer comes back, he said, “the prospects are not going to be good.”
He often thinks of a former patient, a 25-year-old woman with metastatic ovarian cancer. She wanted to die while she still was able to communicate. Liner wasn’t able to help ease her death because the law wouldn’t let him. “I felt like I’d failed her,” he said.
Years before his diagnosis, Liner, now 70, became involved with Compassion & Choices, an organization that promotes aid-in-dying. He has a shelf of books in his San Francisco home devoted to the subject: Being Mortal, Dying Right, Knocking on Heaven’s Door.
He keeps a stack of notecards with quotes about the end of life, which he often recites in speeches to church groups or senior centers. One reads, “The best preparation for death is a life well-lived.”
He believes having medication to hasten death helps terminally ill people live fully in their last weeks or months without being immobilized by fear. “If you are riddled with anxiety, you are not free to concentrate on what’s most meaningful to you,” he said.
Like Swangard, Liner doesn’t know if he would take the medication. He recently married the woman he calls his “beloved” and said he has lots of plans for his retirement years, including writing a screenplay and improving his piano playing.
“My wife says I’d be hanging on to life by my fingernails,” he said.
But that decision should be his to make, with his family and his doctor, he said. “I want the comfort of knowing it’s up to me when enough is enough,” he said.
Tumors had disfigured AshLeigh McHale’s features and spread to her organs. A year ago, AshLeigh, 17, flew from her home in Catoosa, Okla., to the National Institutes of Health in Bethesda, Md., with a thread-thin hope of slowing her melanoma.
One morning a social worker stopped by her hospital room. They began a conversation that would be inconceivable to most teenagers: If death approached and AshLeigh could no longer speak, what would she want those who surrounded her to know?
The social worker showed AshLeigh a new planning guide designed to help critically ill young patients express their preferences for their final days — and afterward.
If visitors arrived when AshLeigh was asleep, did she want to be woken? If they started crying, should they step outside or talk about their feelings with her?
What about life support? Funeral details? Who should inherit her computer? Or Bandit, her dachshund?
AshLeigh grabbed her blue and hot-pink pens, and began scribbling furiously.
When she died in July, she was at home as she had requested. Per her instructions, she was laid out for the funeral in her favorite jeans, cowgirl boots and the white shirt she had gotten for Christmas. Later, the family dined, as AshLeigh had directed, on steak fajitas and corn on the cob.
“I don’t know what I would have done if I’d had to make these decisions during our extreme grief,” said her mother, Ronda McHale. “But she did it all for me. Even though she got to where she couldn’t speak, AshLeigh had her say.”
AshLeigh McHale, center, gave her family detailed instructions about her final wishes, including those concerning her funeral.
A national push to have end-of-life discussions before a patient is too sick to participate has focused largely on older adults. When patients are under 18 and do not have legal decision-making authority, doctors have traditionally asked anguished parents to make advanced-care choices on their behalf.
More recently, providers have begun approaching teenagers and young adults directly, giving them a voice in these difficult decisions, though parents retain legal authority for underage patients.
“Adolescents are competent enough to discuss their end-of-life preferences,” said Pamela S. Hinds, a contributor on pediatrics for “Dying in America,” a 2014 report by the nonprofit Institute of Medicine. “Studies show they prefer to be involved and have not been harmed by any such involvement.”
There are no firm estimates of the number of young patients facing life-threatening diseases at any given time. Cancer, heart disease and congenital deformities together account for an estimated 11 percent of deaths among adolescents, about 1,700 per year. And many thousands live with the uncertainty of grave illness.
“If you are one of the children for whom this matters, or one of their parents, this is a huge opportunity,” Dr. Chris Feudtner, a pediatric palliative care physician and ethicist at the Children’s Hospital of Philadelphia, said of these conversations.
But shifting from hushed talks with parents to conversations that include young patients has met some resistance. Many doctors lack training about how to raise these topics with teenagers. Until recently, most clinical teams believed that adolescents would not understand the implications of end-of-life planning and that they might be psychologically harmed by such talk.
Sometimes when providers do make the attempt, parents or patients may abruptly change the subject, fearful that by joining in, they are signaling that they have abandoned hope.
Yet research shows that avoiding these talks exacerbates the teenage patient’s fear and sense of isolation. In a 2012 survey examining end-of-life attitudes among adolescent patients with H.I.V., 56 percent said that not being able to discuss their preferences was “a fate worse than death.” In a 2013 study, adolescents and parents described such directed family talks as emotionally healing.
Teenage patients can guide, even lead, their medical care, Dr. Feudtner said. But more important, including them in the discussions acknowledges a terrible fact that patient and family members struggle to keep from each other: the likelihood of death.
“Then people can be together, as opposed to alone,” Dr. Feudtner said. The teenage patient feels free to address intimate topics, including “the scariest aspects of the human condition — mortality and pain — but also love, friendship and connection.”
Karly Koch, 20, worshiping in Muncie, Ind. She has a rare genetic immune disorder, and has written about her end-of-life plans.
Creating a Legacy
Karly Koch, a college student from Muncie, Ind., has been treated for many serious illnesses, including Stage 4 lymphoma, all related to a rare genetic immune disorder. Her older sister, Kelsey, died of the condition at 22.
Last spring, Karly, then 19, developed congestive heart failure. Her renal arteries were 90 percent blocked. As Karly lay in intensive care at the National Institutes of Health, a psychotherapist who had worked with the family for years approached her mother, Tammy, with the new planning guide.
“Do we talk about dying?” Mrs. Koch recalled wondering. “Maybe Karly hasn’t thought about it — do we put it in her head?”
“We had already buried a child and had to guess what she wanted,” she continued. “So we wanted Karly to have a voice.”
Karly’s reaction? “She said it wasn’t like we were telling her something she didn’t already know,” Mrs. Koch said.
The guide used by Karly Koch and AshLeigh McHale is called “Voicing My Choices.” While there are end-of-life workbooks for young children and their parents, as well as planning guides for older adults, this is the first guide created for — and largely by — adolescent and young adult patients.
The intention was to create a way for them “to make choices about what nurtures, protects and affirms their remaining life and how they wish to be remembered,” said Lori Wiener, a social worker and principal investigator on the research that led to the planning guide.
Karly Koch with her mother, Tammy.
In the two years since its introduction, more than 20,000 copies have been ordered by families and more than 70 medical centers from Aging With Dignity, the nonprofit that publishes it. “Voicing My Choices” has also been translated into Spanish, Italian, French and Slovak.
In straightforward language, the guide offers young patients check boxes for medical decisions like pain management. Another section asks about comfort. Favorite foods? Music? When visitors arrive, one option could be: “Please dress me, comb my hair and do whatever else is needed to help make me look like myself.”
What gives you strength or joy, the guide asks. What do you wish to be forgiven for? And who do you wish to forgive?
“These are the things that are important to know about me,” one list begins. AshLeigh, who would dance and sing down the aisles of Walmart, wrote: “Fun-loving, courageous, smart, pretty wild and crazy.”
Devastating disease can leave anyone feeling powerless, so a means to assert some control can be therapeutic. For adolescents, who are exploring and defining identity, Dr. Feudtner said, “you can express who you are, what you are and what you care about.”
Karly Koch with her family in Indiana.
By offering young patients opportunities to write farewell letters, donate their bodies to research and create rituals for remembering them, the planning guide allays one of their greatest fears: that they are too young to leave a meaningful legacy.
And so the ability to do it can galvanize them. Lauren Weller Sidorowicz received a diagnosis of metastatic bone cancer at age 18. Determined and outspoken, she joined a focus group of young patients at the N.I.H. whose opinions led to the creation of the planning guide. Days before she died in 2011 at age 26, Ms. Sidorowicz paged Dr. Wiener, frantic to include a final thought in a farewell letter.
To her grandmother, she wrote, “I hope there is potato salad in Heaven as good as yours.”
There are no standards for when and how to introduce a critically ill teenager to end-of-life planning; there are only intuition and experience. Many pediatric cancers have favorable prognoses, Dr. Feudtner said, and raising the topic prematurely may provoke anxiety and fear.
More often, though, doctors postpone the discussion too long, until the patient is too sick to take part. Dr. Maryland Pao, a psychiatrist at the National Institute of Mental Health who helped design the guide, recalled the despair of a mother whose dying son could no longer speak.
“I have no idea what he wants,” the woman told her. “He’s 17, but we never communicated about this.”
Dr. Wiener believes preparation should be done soon after diagnosis, but when the patient is stable. Exploratory talks, she said, become steppingstones, each readying the patient for the next one.
Still, providers encounter problems. “If the family doesn’t want to do it, you’re stuck,” Dr. Pao said. “There’s a lot of magical thinking — that if you talk about it, you’ll help them die.”
And sometimes teenagers themselves put up obstacles to having frank family discussions. Some young patients, for example, did not want Dr. Pao to tell their parents that they were ready to stop treatment. Rather than say as much to their heartbroken relatives, some will pour out their feelings on social media.
Erin Boyle, 25, had been treated for autoimmune disorders since she was 4. Last August, as she prepared for a stem cell transplant for leukemia, N.I.H. researchers asked whether she felt comfortable looking through “Voicing My Choices.”
Ms. Boyle completed most of the guide. At that time, she recalled, “the decisions felt theoretical rather than imminent.”
But shortly after the transplant, she relapsed.
“It was comforting to get my wishes down on paper and free myself to live without worrying about the details of dying,” she said recently.
She died on Wednesday. Her body is going to the N.I.H. for a research autopsy, as she wished, her mother, Ellen, said.
For doctors, end-of-life discussions with adolescent patients can be wrenching. “You have to be self-aware and reflect on your own experiences with grief and loss,” Dr. Pao said. “It’s hard not to be anxious if you have children. You feel helpless. It makes you face your own mortality.”
Ms. Koch on her way to have blood drawn.
On July 25, Karly Koch had an experimental bone marrow transplant. Her family calls that date her “re-birthday.” With 12 medications a day and a surgical mask, she is out and about in Muncie.
Karly takes classes to become a physical therapy assistant. She is a youth leader at her church, where her boyfriend is also a member. She delights in “normal people” activities.
Her parents keep Karly’s copy of “Voicing My Choices” in their bedroom cabinet. “It isn’t gloomy to go through,” Karly said. “It’s kind of fun to get your feelings out there.”
“Now, looking at it,” she continued, “I think I’d like to add some things.”
Henry Fersko-Weiss working as an end-of-life doula for Gloria Luers, 92, of Cliffside Park. Fersko-Weiss helped start a doula program at The Valley Hospital and is beginning another at Holy Name Medical Center.
At 92 and with cancer spreading through her body, Gloria Luers knew she didn’t have much time. She began contemplating her final days, saying she wanted to be surrounded by family and to listen to stories and her favorite music.
But in those last days, she would also have strangers join the round-the-clock vigil at her bedside, people she had never met but who would nevertheless walk into her room knowing that she liked Italian tenors and the lumbering sounds of her great-grandchildren at play.
Robert Gutenstein of Ridgewood in his bedroom, which he shared with his wife, Ellen, who died nearly a year ago after battling cancer.
These strangers, all volunteers, would be there to comfort and console Luers and her family as death neared, making sure her final wishes would be followed and that her dying days paid homage to her living ones.
While hospice workers would manage her physical pain and guide her care, the volunteers, known as end-of-life doulas, would be there so family members could sleep and take a break, supporting everyone through what would be a long, exhausting experience. Their mission would be to help Gloria Luers and her family remain focused on her life instead of her illness and, in the process, gain some peace.
When the family decided to accept the offer by the hospice program to provide the doulas, her daughter, Denise Rich, said she was comforted to know that she wouldn’t be alone if her mother’s death came at a time when her husband was away at work and other family members couldn’t get there quickly enough.
“A big fear of mine is that I’ll be by myself and I won’t know what to do or what she needs,” said Rich, a Cliffside Park resident. “Now I know that there is someone out there who I can call when the time comes.”
The word “doula,” evolved from its ancient Greek meaning of “woman who serves,” has most often been used to refer to someone who coaches a mother-to-be through childbirth, providing emotional support through what can be a scary experience. Henry Fersko-Weiss, a longtime social worker, said it’s a concept that can be applied at the end of life.
Five years ago, he helped start an end-of-life doula program, a free service, at the hospice run by The Valley Hospital in Ridgewood, where the doulas are trained to recognize the signs of approaching death and schooled in easing the stress of a dying person and their families. He is now launching a second program, this one based at Holy Name Medical Center in Teaneck. Paid hospice staff supervise the two programs, but volunteers provide all the bedside support.
Fersko-Weiss, who also founded the International End of Life Doula Association, said he hopes doulas will one day become part of the standard of care at hospices, assisted-living residences and nursing homes around the world.
“We help people be born into the world, why wouldn’t we also want to help as they transition out of this world?” said Janie Rakow of Wyckoff, a doula with Valley.
Rakow and other doulas were there in the final days of Ellen Gutenstein’s life last April. Her husband and daughter often look back on what it meant for them to have seven strangers come in to help when she began to drift away.
By then, the 77-year-old Gutenstein’s physical world had shrunk to the bedroom she and her husband had shared for decades in their Ridgewood home, her hospital bed wedged next to the couple’s wood-framed, king-size bed. The room was crowded with medical equipment, and the tops of dressers and bureaus were filled with medicine bottles and the other detritus of terminal illness. But it was brightened by pictures of the grandkids and beloved collectibles.
As much as possible, for as long as possible, members of Gutenstein’s family wanted her to remain a part of their lives. But even with her husband sleeping in the bed next to hers, her daughter staying over most nights, and her two sons and grandchildren making regular trips in from out of town, it was hard for one of them to be awake and at her bedside every minute of her last days.
In the blur of that emotional time, Robert Gutenstein has forgotten the names of the doulas who spent three or fours hours each keeping watch while sitting in the chair next to his wife’s bed, including the one who was there at the end. But the family hasn’t forgotten the works they performed.
There was the one who lifted their spirits with her beautiful singing voice. There were the others who read aloud to Ellen from the “legacy book” the doulas had encouraged the family to assemble, an album of photos from vacations and major life events as well as letters and written reflections from her children, grandkids and friends.
“What stands out most to me about the doulas is that they were all so loving with someone they had just met,” said the Gutensteins’ daughter, Lisa Silvershein. “Somehow, they all seemed very familiar, like they just understood and were helping us to be prepared for what was coming.”
Kristen Tsarnas, a volunteer doula, said death is a subject in which society has not advanced for the better.
In the frontier days, when hospitals were few and far between, a family brought a loved one home to die and the community came to bear witness to the leave-taking. “This kind of tending to someone at the end of life is really an old thing that kind of disappeared from our modern society,” said Tsarnas, who lives in Allendale.
In describing her role as a doula, she often uses the word “witness.” “It’s sort of a way for the family to feel the significance of the moment — that this is an important enough event that some stranger came to my house to be there for the end of my mother’s life,” she said.
Her view is shaped by the sudden death of her stepfather when she was 18. He was hospitalized, but not expected to die. So she didn’t return home from college and her mother didn’t stay the night at the hospital. More than two decades later, both are burdened by his being alone when he died.
“No one should be alone in a hospital in a cold room when they die,” Tsarnas said.
Fersko-Weiss sees the companionship and comfort the doulas offer as “the missing piece of the hospice mission.”
Hospice programs provide dying patients and their families with a host of services — nurses, social workers, grief counselors, medicine and medical equipment — intended to ease pain and suffering. But hospices can’t offer round-the-clock staff and while their social workers and grief counselors attempt to prepare families for the final days, he said, many still find themselves overwhelmed by the changes that can unfold quickly at the end of life.
“In my years in hospice, I saw a lot of cases where people are kind of unprepared for the final day,” he said. “I think people don’t take it all in until it’s happening, and by then they are emotionally and physically exhausted.”
The doulas are trained in calming and soothing techniques, such as meditation, aromatherapy and therapeutic touch. Most don’t come from medical or counseling backgrounds, and they are not expected to take on the direct caregiving tasks that hospice staff and home aides perform. Their job descriptions are more amorphous — some see it as akin to social work, nursing or ministering. Others say the mission is simply to be present and ready to serve.
“A lot of our doulas are very spiritual, holistic kind of people who just have a calling to do this,” said Bonnie Schneider, who manages Valley’s doula service, which is offered as a no-cost service to patients in the hospice program.
At a recent training session for the 19 volunteers learning to be doulas for the Holy Name program, Fersko-Weiss stressed the importance of a lead doula paying early visits to a dying person to help create a “vigil plan” that spells out what that individual wants — candles burning, their hands held, poems read and the like. Such plans are shared with all doulas assigned to the case. The doulas need to be sensitive, Fersko-Weiss told the trainees, to the fact some families may have conflicts still playing out, so they should try to encourage family members to express their feelings of loss and to both seek and offer forgiveness.
Since Valley began its program in the fall of 2009, the doulas have participated in more than four dozen vigils, many in private homes, but some in nursing homes or in-patient hospice centers. The typical vigil lasts 24 to 48 hours, Schneider said, and the longest went eight days. Valley’s 40 doulas have worked with many other terminally ill patients and families, helping them to think about how they want the final days to play out.
The doulas are called in at the onset of what’s called the active dying stage, when they exhibit symptoms such as slowed breathing, a drop in blood pressure and a third day of refusing to eat.
For Bob Eid, a doula from Mahwah, being at a death is a profoundly moving experience.
“I think death is a very sacred moment,” he said. “I’m not uncomfortable around it.”
Before Coleen Shea made it her official calling to sit with the dying, family circumstances put her at the bedsides of three of her own.
The first was six years ago, when her 92-year-old grandmother died and the scene at the bedside was like something out of a Hallmark special, children and grandchildren lined up three deep around her bed.
“Everybody was able to lay a hand on her and to tell her what she had meant to them,” Shea said. “Her whole bedside was surrounded. It was exactly how anyone would want it to be. I left there thinking it was an immeasurable privilege to have been there.”
Shea also spent time with two uncles in their final days. Those deaths were less peaceful, but no less moving. She recalls when one uncle suffered a painful seizure a few days before his death. She comforted him by telling him that he had fought bravely and that it was all right to let go.
“I sort of felt like I had made a difference,” she said.
The Glen Rock mother of two compares her doula position to that of a nurse who must move from room to room, tending to different tasks and needs in each.
She doesn’t expect a family to get to know her. Instead when she walks into a new home, she scans her surroundings for the things that most need doing — someone in need of a break or a comforting word, or a patient with arthritic hands who might enjoy a massage.
“I’m just as afraid of dying as anybody else,” she added. “But for whatever reason, I don’t shy away from being there.”
Rakow, who volunteers for both the doula and hospice programs at Valley, said she is routinely asked whether being present at so many deaths makes her sad.
“It’s actually the opposite. We feel humbled to be there and uplifted by the expressions of love we witness,” she said. “There are times when family members have had tough times with each other throughout their lives, and you’ll see how that just strips away at the end, and how they come together. It’s incredibly moving.”
Nearly a year after his wife’s death, Robert Gutenstein still regularly pages through her legacy book. The last picture, taken just a few days before her death, is of Ellen celebrating Easter dinner with her family and friends.
“The doulas were just wonderful to her,” he said. “They engaged her in life so that she wasn’t a body sitting in a corner isolated from things.”
The family came to rely on the ever-present doulas in Ellen’s final days. “At that point, you don’t want to leave her alone,” said Silvershein, Ellen’s daughter. “Because the doulas were there, we were able to sleep. It was just kind of nice to put somebody else in charge.”
Silvershein was headed to bed a little after 11:40 on Friday, April 25, when she stopped into her parents’ room to say good night. She and the doula noticed a change in her mother’s breathing pattern and woke her father, who had been asleep for a few hours in the bed next to his wife’s.
“I’m half-asleep,” Robert Gutenstein recalled. “I put my hand on her hand, she gives me a squeeze, and that was it. She stopped breathing.”
Rakow, who had served as the lead doula on Ellen’s case, arrived at the home with bagels for breakfast the next morning. Several doulas attended the funeral. A month later, Rakow and Silvershein together talked about the shared experience.
Silvershein credits the doulas with helping her find her way in those emotional days. Because a person’s hearing can be the last sense to go, the doulas encouraged her to keep reassuring her mother, even after she drifted out of consciousness.
“They told me, ‘Tell her you love her, tell her that Dad is going to be OK, and that we’re all going to be OK,’Ÿ” Silvershein said. “I don’t know that I would have thought to say all of those things without the doulas being there. I feel like they just guided us through the whole experience.”
A month ago, on a visit with Gloria Luers to plan what she and her family might need from the doulas, Fersko-Weiss asked about the sights and sounds that bring her comfort. In addition to music, she talked of the frequent visits of her young great-grandchildren, who call her “GGMa.”
Her memory still firm and clear, she regaled him with anecdotes from a girlhood living without a mother, her husband’s war years and the years she spent tending to children and grandchildren. “I am good at telling stories, and I have some good ones to tell,” Luers said. Fersko-Weiss pledged to write them down and help her family assemble a legacy book for her loved ones.
Luers began to decline a week ago, no longer able to speak and unable to get out of bed, and was moved to the Villa Marie Claire hospice in Saddle River. Her daughter stayed over most nights and her son and grandchildren visited often.
On Wednesday, five doulas began taking shifts, playing songs sung in Italian by Andrea Bocelli and sitting with family members as they shared stories and talked about the Fort Lee home where Luers raised her family.
“It was a lot of reminiscing and talking about the things that stood out about her in life,” Fersko-Weiss said.
About 9 a.m. Friday, as Gloria’s breathing became shallow, Fersko-Weiss woke her daughter, who was sleeping in another room after being up much of the night with her mother.
Gloria Luers died about 15 minutes later, with both of her children, a grandson and Fersko-Weiss — not a stranger anymore — at her bedside. Complete Article HERE!
