Most treatments are meant to heal, but some are for palliative care (end of life care) in terminally ill patients. Palliative care is to provide symptomatic relief from a chronic and serious illness, and to reduce the risk of developing co-morbidities and also to improve the patient’s quality of life. The aim of the palliative care is not to treat or cure the underlying disease, but to treat the bothersome symptoms of the disease. Some of the illnesses that may utilize palliative care treatments include cancer, HIV/AIDS, ALS, multiple sclerosis, etc.
Finding a proper and safer course of treatment (long-term drug safety) is one of the main challenges being faced by palliative care practitioners. The goal of the drug regimen is to alleviate the symptoms as well as to mitigate the adverse events of these drugs. For palliative care of cancer patients, opioid analgesic is the prime choice of physicians, but it can cause serious harm – or even fatal events – in the long run.
The therapeutic potential of cannabinoids to treat sleep problems, pain and anorexia might play an important role in palliative care. Cannabinoids promote analgesia and inhibit inflammation via endogenous signaling, along with other benefits such as neuroprotection and anti-cancer activity, which are significant for terminally ill patients. In cancer patients, exogenous cannabinoids act synergistically with endogenous opioids and provide pain relief, opioid-sparing benefits and reduce opioid dependence and tolerance threshold. Cannabinoids may have palliative benefits not only for cancer patients, but also in neurodegenerative, HIV/AIDS and chronic pain patients. Despite these benefits, the use of cannabinoids in critical and palliative care patients remains controversial.
According to DEA classification, cannabis is a Schedule I drug that is hazardous and without any medicinal value. Most cannabis strains do not exceed 20% THC, whereas prescription drugs, such as Dronabinol, has a 100% THC-like substance, which has been classified as Schedule III drug. Naturally occurring cannabis has several ingredients that augment the treatment benefits and negate the adverse events. However, this is not applicable in synthetic, single compound cannabinoid formulation. To reduce opioid-related morbidity/mortality and improve palliative care in terminally ill patients, considering the cannabinoids as a mainstay pain management drug is the critical need at the moment.
The risk-benefit profile of cannabinoid-based medicine greatly depends on the drug formulation and route of drug delivery.
Problems Associated with Palliative Care
Opioid overdose-related deaths are rising across the world and in the United States. Increased availability of synthetic opioids worsens the overdose mortalities, and most of the cases are due to misuse or accidental exposure. The widespread expression of mu-opioid receptors in the brainstem leads to increased binding of opioids, which also controls the respiration and is the cause of opioid overdose mortality. Overdose opioids bind with these mu-opioid receptors, which results in the suppression of breathing and death. Long-term opioid treatment also leads to development of tolerance, and the patient often requires incremental dose increases for better pain management. Although, mu-opioid antagonists, such as naloxone, are available to reverse overdose, it must be administered within few minutes of overdose crisis, which is not always possible. In addition to opioid tolerance, opioid dependence or addiction can develop during palliative care. Opioid addiction is a serious, relapsing and chronic neuro-psychiatric illness that requires long-term treatment for recovery.
The complete symptom burden of palliative care patients is poorly understood and opioid treatments may add up to other problems, such as severe constipation and prescription of laxatives to relieve constipation. According to a large assessment study that involved 50,600 Caucasian cancer patients who were on opioid therapy as palliative care, approximately 12% of patients reported moderate or severe constipation at the first assessment, and nearly 19% patients reported the same during the last assessment. All patients were on opioid therapy that resulted in moderate to severe constipation. Prescription of laxatives to treat the constipation is likely in these patients. The goal of the palliative care treatment is to relieve the symptoms, if not to mask the agonizing pain in palliative care patients including terminally ill cancer patients. Opioid therapy appears to be worsening the problems by causing/increasing distressing symptoms that require further treatments, which is undesirable and reflects the complexity and quality of palliative care treatment.
Why Cannabinoids Are Better Than Opioids In Palliative Care
While healthcare practitioners are in dilemma about prescribing medical cannabis for illnesses, the use of medical marijuana for palliative care is trending upward. Medical cannabis significantly reduces the use and dependence of opioids and also opioid overdose-related death. According to a study by RAND Corporation, there is a plausible link between the legal medical marijuana dispensaries and a reduction in opioid-related deaths in those areas. The study compared the rate of opioid-related deaths in states with and without legal marijuana dispensaries. As reported by the study, a lower rate of opioid-related mortalities (16-31%) and fewer reports of hospitalizations (28-35%) for related treatments were observed in states with medical cannabis dispensaries, compared to states without medical cannabis dispensaries. Patients who obtained treatment without legal intervention (penalized due to illegal substance use), further decreased the rate of hospitalization (up to 53%). The duration of the presence of legal marijuana dispensaries were also found to be related with the decline in opioid-related morbidities and mortalities.
Palliative care patients can easily obtain prescription medical cannabis from these legal dispensaries to reduce their reliance on opioids, prevent the opioid-related problems and also for better management of their symptoms. According to Nora Volkow, Director of the National Institute of Drug Abuse, the evidence about the efficacy of cannabinoids is strong and cannabis could ‘provide a powerful new tool’ to combat opioids and their related problems.
According to a comprehensive literature review of available studies, patients reported improvement in quality of life, and the improvements were considered as a therapeutic outcome by the patients. However, the healthcare providers raised concerns, and were in a dilemma about supporting the therapeutic cannabis use, as the used cannabis was illegally obtained.
A Norwegian study concluded that cannabinoids possess therapeutic effects in neuropathic pain, as well as moderate anti-emetic and appetizing effects in certain groups of patients. Due to non-availability of randomized clinical trials, the study authors were unable to recommend the medical use of cannabis. All of these symptoms and indications are applicable for palliative care cancer patients. To treat vomiting, anorexia and pain, a regimen of at least three drugs should be administered, and the patient must go through the side effects of these medicines. Instead of three drugs, cannabinoids as a monotherapy can be considered to treat all three symptoms, which are common in terminally ill cancer patients. Hence there are grounds to employ medical cannabis as a palliative care drug.
Analgesia is a common benefit shared by opioids and cannabinoids. However, cannabinoids differ from opioids in anti-nociception by the involvement of endocannabinoid system. Further studies suggested the additive effects of cannabinoids and opioids in pain modulation. Medications being prescribed to augment the opioid effects and to reduce the opioid doses are called opioid-sparing drugs. Cannabinoids can greatly increase the analgesic potency of opioids and thus relieve pain in lower doses of opioids. According to studies, cannabis greatly reduced the need for opioids, or even complete eliminated the need for opioid use. Additionally, the cannabinoids work synergistically in alleviating some of the symptoms of terminally ill patients, such as pain in end-stage cancer patients.
Clinical trial evidence found that oral cannabinoids (Sativex) provided better pain relief in opioid-refractory cancer pain than long-acting opioids. The treatment was well-tolerated by the palliative care patients. According to three randomized control studies, cannabis use significantly improved the appetite, weight gain and stabilized body weight in AIDS wasting syndrome. These benefits might be helpful for terminally ill patients suffering from cancer-associated cachexia.
Most of the systematic review studies that are inconclusive or even against the use of medical cannabis have assessed the randomized clinical trials of synthetic cannabinoids such as Dronabinol but not plant-derived cannabinoids. Even some of the studies that assessed the natural cannabinoids lacked adequate statistical power due to flawed clinical trial design. Assessing these studies cannot provide a definitive conclusion.
Conventionally, palliative care management for most of diseases – including cancer – is opioids. Due to inevitable risk of tolerance, the patient has to take more and more narcotics, even if the drug provides little relief. Higher doses can make the patients become more confused and lethargic, with the risk of developing depression, anorexia, nausea and vomiting.
Cannabis could definitely reduce the dosage of these narcotics and also improve the symptoms by its synergistic actions. For terminally ill patients, marijuana could reduce the anguish, improve the quality of life and may also add days to their life.
Should doctors do everything they can to preserve life, or should some medical techniques, such as cardio-pulmonary resuscitation (CPR), be a matter of patient choice? Doctor Sarah Simons wades into the debate and argues that ‘do not resuscitate’ decisions are all about patients’ human rights.
Of all our human rights, the right to life is the one most often held up as the flagship, fundamental right: after all, without life, how can one learn, love, communicate, play or have a family?
Protecting patients’ rights to life and health involves providing necessary life-saving treatment (known as resuscitation) if their life is threatened by serious illness or injury. It also involves enabling patients to live as well as possible for as long as possible: for example, by treating preventable diseases and encouraging people to adopt a healthy lifestyle. However, although many aspects of medicine and health are unpredictable, death is the one certainty for all of us.
Is There a Right to a Good Death?
In recent years, there has been much debate surrounding how healthcare practitioners should approach end-of-life issues with patients. A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.
When healthcare professionals acknowledge that someone is approaching the final stages of their life, and no longer responding to life-saving treatment, treatment is not withdrawn, but instead, the goal is changed to treatment focussed on preserving the patient’s quality of life and managing their symptoms in accordance with their wishes. It’s important to draw a distinction between this and the ethical debate on euthanasia, which is altogether different from end-of-life care and natural death.
A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.
This change of focus often includes completing a ‘Do Not Resuscitate’ (DNR) order, instructing healthcare teams not to carry out cardiopulmonary resuscitation (CPR) when the patients’ heart and lungs cease to work. This decision is usually made on the grounds of pre-existing medical conditions and poor physiological reserve and frailty, which mean that CPR will not be successful. A DNR should always take into account the patient’s informed opinion on the matter, or at least their next of kin’s.
A DNR decision only refers to CPR. The patient can still receive treatment for related issues, such as antibiotics for an infection, and all other life-preserving or life-saving treatments can be given until the patient’s heart and lungs stop working. A DNR decision never means that life-saving treatment is not given – the purpose of a DNR is to allow the patient to pass away naturally and peacefully, with dignity and without traumatic medical intervention.
What Exactly is CPR?
Understanding the reality of CPR is vital to understanding why it is a human rights issue. CPR is used when someone has a cardiac arrest, which means they have suddenly stopped breathing and their heart has stopped beating.
CPR is traumatic, undignified and usually unsuccessful in patients of all ages.
Sadly, despite Hollywood’s optimistic depictions of resuscitation, the reality is that CPR is often traumatic, undignified and usually unsuccessful in patients of all ages. CPR will not reverse years of gradually shrinking muscle mass, rejuvenate brains worn down by the steady decline of dementia, remove cancerous tumours or clear obstructed lungs weathered by years of COPD, which are often the underlying causes when someone’s heart and lungs have stopped.
CPR will cause bruising, vomiting, bleeding and broken ribs. CPR will render someone’s dying moments traumatic and undignified, and it will leave their friends and families with lasting memories of a failed, brutal resuscitation rather than a mental image of their loved one peacefully slipping away pain-free and asleep.
Article 3 of the Human Rights Convention specifically refers to the right to protection from inhuman or degrading treatment, and understanding the brutal, traumatic reality of CPR is a crucial consideration when thinking about DNR decisions. The GMC goes on to reference “the right to respect for privacy and family life (Article 8), the right to freedom of expression, which includes the right to hold opinions and to receive information (Article 10) and the right to be free from discrimination in respect of these rights (Article 14).”
The GMC guidance also highlights that the Human Rights Act, (which incorporates the Human Rights Convention into UK law), “aims to promote human dignity and transparent decision-making”, which should also be key concerns for doctors making decisions across all aspects of medicine.
Making the Right Choice For The Patient
Having open, frank discussions about CPR, and end-of-life decisions in general, enables healthcare professionals and patients to make informed decisions together. Doing so empowers patients to ask questions and insist that their rights are respected. It gives patients time to talk to their loved ones about what’s important to them, including any religious considerations, before their health deteriorates to a point where these conversations may not be possible.
Having open, frank discussions about CPR … enables healthcare professionals and patients to make informed decisions together.
Avoiding these conversations, while perhaps understandable given that no-one likes to think of their loved ones dying, means that important questions may not get asked and the patient’s wishes may go unheard. Making decisions on CPR and other practical matters is important, but so is acknowledging that someone wants to spend their last days eating mint chocolate chip ice cream at home listening to a specific Eva Cassidy album whilst surrounded by their pets and children.
As the NHS turns 70 later this year, and continues to navigate the challenges of an ageing population, conversations about end-of-life care are more important than ever before. Grief and bereavement are difficult, emotionally charged topics of conversation, but death is a normal human process. Taking the opportunity to talk about what we want at the end of our lives empowers us to make informed decisions and ultimately help all of us to die well one day.
As with thousands of other Canadians, Robert Wayne Nelson had the chance to die on his own terms.
Nelson’s earlier diagnosis of Parkinson’s disease was enough to handle in the years leading up to his spring 2016 diagnosis of progressive supranuclear palsy — a disease his daughter, Jen Wiles, described as Parkinson’s “evil big brother.”
Doctors didn’t know what to do. The severe brain disorder holds no effective treatments.
However, as a biologist throughout his life, the then-71-year-old had always followed legislation surrounding medical assistance in dying.
“My dad was the first medically assisted death in our community,” said Nelson’s only daughter, Wiles, of her father who died on Feb. 15, 2017, in Camrose.
“He really understood that there was a place for this — not that he ever thought he would use it.”
In February 2015, the Supreme Court of Canada ruled in Carter v. Canada that parts of the Criminal Code prohibiting doctor-assisted death would need to change to satisfy the Canadian Charter of Rights and Freedoms.
The ruling opened the door for medical assistance in dying and on June 17, 2016, federal legislation allowed people to die on their own terms, under certain circumstances.
In October 2017, Health Canada released numbers showing there were 2,149 medically assisted deaths in Canada between Dec. 10, 2015, and June 30, 2017.
As of April 30, 2018, Alberta Health Services reported 364 Albertans had received medical assistance in dying — of those, cancer, multiple sclerosis, ALS and advanced lung disease are the most-cited health conditions.
Those who wish to end their life on their own terms must have a grievous and incurable condition. Then, they have to make their initial request before two required assessments, followed by a 10-day waiting period — one that can be waived.
Wiles said their fight for her father to undergo doctor-assisted death was a challenging one.
“We didn’t have community support because of our faith-based community, which was really challenging,” said Wiles.
“It was really hard to find assessors in central Alberta.”
It took nearly a year for Nelson to get his wish of assisted death, but it was something that left his family at peace.
“Despite the fact that we went through this really challenging couple of months … for us, it was really good,” said Wiles.
“The outcome for our family was positive — it was what he wanted. After his death we felt good, which is a strange thing to say. We did everything with him. We went to the funeral home, we picked up a column burial together, we did all this stuff with him.
“Through all those months, we came to a place that was really kind of beautiful and we have felt good since. We were able to really grieve ahead of time. He was relieved, we were relieved. We got up the next morning and we felt good.”
Knowing he was able to go out on his own terms only help the family he left behind.
“He did not want to go into palliative care, he did not want to see the end of his disease process,” she said.
The day after Nelson died, Wiles’ mother went to her coffee group sharing the story of the day before.
There, a woman who lost her husband nine years prior to a terrible battle with cancer wept openly as she wasn’t able to be over the trauma of his death.
“My dad gave us a gift — we didn’t have to watch that suffering,” said Wiles.
“He already couldn’t write, couldn’t read, he couldn’t be on the computer, couldn’t talk on the phone. All the beautiful things he did with his life, he couldn’t do anymore.”
Shanaaz Gokool, CEO of not-for-profit Dying with Dignity, explained ahead of a Saturday speaking event marking two years since the practice became legal how the process can be different for everybody.
“The more precarious your health is, the greater chance you have of losing capacity and therefore you can lose the right altogether. Medical assistance in dying is a life-affirming treatment,” she said, noting in communities that are less prepared, it’s more difficult to find support.
“Assisted dying for those left behind can be the gift of no regret.”
For those in small communities like the one Nelson lived in, the process for medically assisted death can be a frustrating one.
However, those living in major centres like Toronto can go through the process start to finish in one day.
Gokool said the next step for the country is looking at opening up the legislation to make medically assisted deaths easier and more accessible.
“The problem is that the legislation uses deliberately vague language and it excludes many hundreds and possibly thousands more. We have different interpretations from one end of the country to the other in terms of the eligibility criteria,” she said.
“Then we have different access issues people are having — hurdles and obstacles in their way.”
A loss of independence is a fear many seniors have. When this fear is realized, there are several ways caregivers need to help. According to an AARP study conducted in 2012, 57% of seniors over age 70 do not find it easy to live alone and need help with daily tasks. This loss of independence can have a toll on senior’s psychological and physical well-being. Most people begin to live and perform daily life tasks independently by the age of 20. About 50 years later, many find that independence is no longer safe or viable. The loss of independence seniors face can often result if grieving, frustration, and other emotional upset. Caregivers can help seniors by understanding the process.
Types of Independence Seniors May Lose
As seniors’ bodies and/or minds degenerate, they can experience a variety of types of losses. Their independence can be impacted in ways that change their lifestyles and even their understanding of the world. Some types of independence seniors may lose include: • Mobility • Ability to live alone • Memory • Comprehension/decision-making skills • Strength to perform daily tasks • Energy to clean or cook • Social life • Sight • Hearing
How to Help Seniors Cope with Increased Dependency
Relying on other people’s assistance for basic tasks like bathing or common activities like driving can be frightening and frustrating for seniors. With the loss of independence, seniors also tend to lose some control over their schedule, freedom, preferences, and more. Caregivers can help make decreased independence more bearable using strategies like these:
Maintain a Standard of Dignity
Requiring assistance with activities like bathing or shopping does not mean that seniors need to give up their dignity. Caregivers should always guard seniors’ privacy. It is also wise to use the terms a senior does when referencing body parts, activities, or even hygiene products.
Ask Instead of Telling
Caregiving for someone who has lost a type of independence is a supportive role, not a leading role. Caregivers should ask seniors about their preferences, needs, etc., instead of telling them. For example, if a senior cannot cook for themselves, a caregiver should ask for input for meal planning. Give Options for Caregiving Since dependence requires trust and can be very personal in nature, it is important for seniors to have choices. Learn if a senior prefers same-sex caregivers, certain routines, etc.
Stay Organized and Consistent
Dependence means a loss of control. Seniors have to wait on others for assistance, which can be stressful. Caregivers should remain consistent in their routine so that seniors don’t need to be anxious about when or how their care will be provided. Organize necessary materials so they are accessible to seniors who cannot mobilize independently as well.
Offer Reminders That You Can Be Counted On
Depending on other people for help, especially with essential tasks, requires trust. This can cause seniors anxiety and stress. Remind a nervous senior that he or she is in good hands and is being taken care of to assuage their fears.
Ask Instead of Telling
Caregiving for someone who has lost a type of independence is a supportive role, not a leading role. Caregivers should ask seniors about their preferences, needs, etc., instead of telling them. For example, if a senior cannot cook for themselves, a caregiver should ask for input for meal planning.
One of the most common misconceptions about end-of-life care is that the focus is solely on pain management. While that is a key component of any hospice care program, many providers, including Hospice of Westchester, recognize the importance of a holistic approach to treating the patient, not just their symptoms. It is a proven fact that patients diagnosed with a life-limiting illness greatly benefit from alternative therapies, in addition to medical treatment.
Often called complementary care, these therapies can maximize patients’ comfort and peace of mind and provide relief for their primary caregivers.
Caring for the “whole” patient is an essential feature of hospice. Mind-body complementary therapies such as massage, reflexology, music therapy, art therapy and pet therapy can help ease tension, reduce anxiety levels and improve the overall comfort of the patient.
A good hospice provider should arrange for these therapies to be provided in the patient’s residence, whether that be their home, a hospital or a skilled nursing facility. Together, the patient, their family and hospice team decide which therapy would best address symptoms of pain, stress and anxiety.
We are proud to offer all of the above therapies, at no cost to our patients, through The Anna & Louis H. Shereff Complementary Care Program. While they all can be useful depending on a patient’s needs, here is a closer look at how massage therapy and reflexology can positively benefit hospice patients and their families.
It is widely accepted that power of touch can have a healing impact on pain and decrease stress. Massage is a form of structured therapeutic touch, which can relax patients, relieve muscle tension, reduce anxiety levels and blood pressure, boost the immune system and moisturize the skin.
Licensed massage therapist Maria MacIlvane first recognized the positive effect of touch years before she started her massage career. When her mother was on hospice care, MacIlvane was awed that simply rubbing her mother’s shoulders would instantly bring upon relaxation.
“I continued to massage her every day. It was so beneficial and I could not believe that just touching someone compassionately could affect the process they were going through so deeply,” MacIlvane said.
After the death of her husband in 2007, MacIlvane needed a change and wanted to pursue a career she was truly passionate about. She became a licensed massage therapist in 2010 and expanded her therapies to hospice patients three years ago.
MacIlvane said there are many benefits of massage therapy on patients diagnosed with a life-limiting illness, including helping with muscle tension, circulation and anxiety. She also works with patients’ family members to teach them what they can do in between sessions to help their loved one, and even gives them tips for acupressure that can help with their own anxiety and stress.
“When patients know that someone is with them, holding their hand and providing a compassionate touch, the effects are amazing,” MacIlvane said.
Reflexology is based on the belief that specific areas of the feet and hands correspond with specific parts of the body. Gentle stimulation of these areas with the thumbs and fingers relieves stress and tension, improves circulation, promotes normal body function and results in a feeling of deep relaxation.
Gabrielle Zale, a nationally certified reflexologist, began working with hospice patients shortly after starting her career 17 years ago. However, her knowledge of how touch could help those with an illness started many years earlier. She remembered how people pulled away from her own mother when she was sick, as if they were afraid to touch her.
“No one should feel that alone,” Zale said. “Ultimately, touch is the greatest healer, particularly at this final journey in life. Even though some patients may not be awake and alert, by touching them in this way you are acknowledging that they are still there and still part of the world.”
Zale said that, even if a patient can’t speak, she is able to sense small body changes that show the effects of her practice. “It’s a subtle energy shift. Their breathing slows down — you can tell they are relaxing and may be feeling less pain and anxiety. They can tell that you are acknowledging them and are really present with them,” she said.
“This work is a really sacred thing for me. I’m not just holding another person in my hands, I’m holding their soul in many ways.”
On a cold winter morning, Phil Estes gets into the private ambulance he’s hailed for the more than two-hour journey to Spokane, all 99 pounds of the former Hanford engineer clinging to his frail 6-foot-tall frame as his gurney is secured in the vehicle.
He’s taking this trip not to save his life, but to be able to end it. As weak as Estes is, this is his last resort.
The 81-year-old is several years into his fight against colon cancer. He can barely sit up for five minutes at a time, let alone take care of himself. He’s in pain, it’s hard to breathe and the cancer that has riddled his body is going to kill him. So he’s done.
He wants to take “the pill.”
“I’ve lived a long life, a happy life,” Linda Estes recalls her dad telling her family at the time. “I want you to go on with your life, but I’ve thought it all through, and this is the best option.”
But as his family would soon learn, getting a lethal dose of medication, which is legal under Washington’s Death with Dignity Act, involves much more than a single pill. And in Eastern Washington, it can mean long roadtrips to find doctors and pharmacies willing to validate a patient’s terminal illness and fill a fatal prescription.
In the 10 years since voters passed the Death with Dignity Act, the vast majority of terminal patients who have opted to die under the law lived in Western Washington — more than 90 percent of cases most years — despite Eastern Washington accounting for more than 20 percent of the state population.
The discrepancy between the two sides of the Cascades, experts say, is largely due to access: Even those who can cover thousands of dollars in out-of-pocket costs aren’t guaranteed to live in an area where a doctor or hospital system is willing to participate.
In Estes’ case, Dr. David Jones had been working with him for years and was willing to learn how to sign off as the attending physician and write him a prescription. That meant Estes just needed another consulting doctor to agree he was mentally competent, deathly ill and not being coerced to get the life-ending medication.
But Jones learned that participating would violate policy at Kadlec, the Tri-Cities hospital system where he works, and he feared he might lose his job. The previously secular system had recently been acquired by Providence, a Catholic health-care system that generally doesn’t allow its employees to participate under the rules of the act.
So the family scrambled to find other doctors.
“We called everybody we could think of,” Linda Estes recalls. “At one point my mother was carrying all the cellphones and the house extension in a bag with her, so whoever called, she could answer them.”
Eventually, with assistance from End of Life Washington, a Seattle-based organization that helps people navigate end-of-life options, they got in touch with a Spokane doctor willing to sign the attending paperwork, and a local physician agreed to handle the consulting role. But the Spokane doctor wanted to diagnose Estes in person, spurring the $1,400 contracted ambulance ride from Richland to Spokane.
After an exhausting day of appointments, Estes got his prescription.
“I got out to the ‘cabulance,’ and I put the bag in dad’s hands,” Linda Estes says. “He grabbed that little [prescription] bag and his whole body relaxed. He’d been so afraid that at the last minute, that this decision that was his to make would be snatched from him.”
Estes took the medication at home Jan. 4, 2016, fell asleep and died peacefully with his daughter holding his hand.
But Linda Estes questions why it was so difficult to access something that was legal, especially when her father’s doctor was OK with the decision.
“My mom and I were able to accomplish this because we had the financial means and educational resources,” she says. “What do people do who don’t have these kind of resources? It shouldn’t be this hard.”
So she’s joining efforts to make the process easier for others and ensure physicians who want to sign off can do so.
Washington’s role in nationwide right-to-die efforts has a complicated history. In 1997, the U.S. Supreme Court reviewed a Washington state law that made physician-assisted suicide a felony. The court held that the law was fine, but also left the door open for states to pass laws allowing the practice if it wouldn’t violate their own constitutions.
That same year, Oregon became the first in the nation to enact its Death with Dignity Act.
A decade later, nearly 58 percent of Washington state voters approved their own version of the act, making Washington the second state in the country to allow the practice. Assisted suicide is still illegal under state law, but under the Death with Dignity Act, people who are already dying and meet the qualifications are not considered to be committing suicide — their underlying illnesses are listed as the cause of death on death certificates.
Since then, three other states — Vermont (in 2013), Colorado (2016) and California (2016) — and the District of Columbia (2017) have also legalized it. Opponents have filed various challenges in court, but each of the laws have been allowed to move forward. Montana hasn’t passed a similar law, but the state’s Supreme Court determined in a 2009 case that nothing in Montana law prohibits physicians from participating. That means about a sixth of the U.S. population lives in a state where the process is legal, and several states are currently considering similar bills.
The majority of American adults believe that someone has a moral right to end their life if they are suffering great pain with no chance for improvement (62 percent), or have an incurable disease (56 percent), according to a 2013 Pew Research survey on end of life. However, only 47 percent approved of laws allowing doctors to prescribe lethal medication to terminal patients.
How that process is referenced largely depends on viewpoint: Opponents typically refer to it as “physician-assisted suicide” or “euthanasia” (mercy killing), while proponents tend to use “death with dignity” or “physician aid-in-dying.”
Many opponents, including large sectors of the medical field and religious organizations, consider the act a crime or immoral. Some worry there could be a slippery slope: If patients think they are a burden on their families, they may feel pressured to die sooner; or insurance companies could decide it is cheaper to pay for fatal medication than further treatment. In summer 2016, Pope Francis told medical leaders that physician-assisted suicide was “false compassion.”
“Frailty, pain and infirmity are a difficult trial for everyone, including medical staff. They call for patience, for ‘suffering-with.’ Therefore, we must not give in to the functionalist temptation to apply rapid and drastic solutions, moved by false compassion or by mere criteria of efficiency or cost effectiveness,” the Catholic News Agency reported Francis saying. “The dignity of human life is at stake.”
But proponents point to very specific protections written into the law. More than one physician needs to determine someone is terminally ill and not being coerced. At least one witness to the request for medication must not be related or stand to gain financially from the person’s death. There are mandatory waiting periods and the chance to rescind a request before a prescription is filled.
In states where it is not legal, people sometimes take extreme measures to die on their own terms.
Lacie Agidius was drinking coffee with her father in Lewiston, Idaho, when he received the worst call of his life.
Her grandfather was on the other end. He’d dressed in his best Sunday suit, organized important documents and was calling to make sure someone knew where a few things were on the family farm before taking his own life.
“He had told [my dad], ‘I want you to know, I don’t want to freak you out: Today is the day. I’m getting ready to walk down to the car,'” Agidius says. “He said, ‘This is not a call for help. This is absolutely what I want to do.'”
After being diagnosed with prostate cancer, her grandfather chose not to treat it. For months, he’d told his family he was getting his affairs in order and planned to take things into his own hands if it came to the point where he was in too much pain and couldn’t care for himself, but they’d largely brushed him off or were in denial, Agidius says.
Then came the call. In an awful shock to Agidius’ father, not only did her grandfather warn him not to call authorities, but he also said if he wasn’t successful, he wanted them to “finish the job.” A half-hour drive away, her father refused and said, “You don’t need to do this.”
“The whole conversation was awful,” Agidius says. “That long car ride for my dad and brothers, not knowing what they were going to find, that whole experience was so traumatic.”
By the time they arrived, it was too late.
Agidius, who now works in hospice care in the Spokane-Coeur d’Alene area, says she wishes that life-ending meds would have been an option for her grandfather, as it would’ve made things easier on everyone to know what was coming, and would have been less frightening for him, as it would have provided certainty.
She still lives in Idaho, where lawmakers made physician-assisted suicide a felony in 2011, partly in response to efforts similar to those that legalized the practice in neighboring states.
“It is something that is hard for people on the Idaho side to think we wouldn’t have that option,” she says. “You plan that date, then you can have time with that person, you know it’s happening. You can say those things you want to say and not have a shocking situation.”
PLANNING FOR THE UNKNOWN
Aside from the planning required by mandatory waiting periods, people with life-ending meds tend to plan out the process with family, and in each of the cases volunteer client adviser Jessica Rivers has worked on, they tried to say meaningful goodbyes to their loved ones.
Rivers, who lives near Palouse, Washington, has been a volunteer with End of Life Washington for about four years, working with families in Pullman, Spokane and rural communities in the region.
In the first case she worked, she and other End of Life volunteers arrived on the date their client selected to find his home full with family, friends and neighbors.
“They had food and drink and had all been having his celebration of life that morning,” Rivers says. “It was really remarkable, because we just let them take their time and do what they needed to do.”
The man, dying of aggressive cancer, gave his own eulogy, and everyone surrounded him as he lay down in bed, took the medication and talked them through how he felt before falling asleep. In the quiet, someone started singing “Amazing Grace,” and everyone cried.
“It was very powerful for me, and it was very gentle and very peaceful for him,” Rivers says.
For her, the choice to get involved in end-of-life care started about 20 years ago, when she cared for her mother, who was dying of pancreatic cancer.
“I remember my mom looking at herself in the mirror one morning, and the cancer had just ravaged her body,” Rivers says. “She was actually, amazingly enough, OK with dying, but she wasn’t OK with the process of getting there, and I think that’s true for most of the folks I’ve been with at End of Life.”
Of the 25 cases she’s been involved with through the organization, each patient died, though only six of them decided to take the medication.
“The majority of them told me, ‘I may or may not use this, but it gives me peace of mind,'” Rivers says. “And one of the things I tell them on that first visit when I meet them is ‘I’m not invested at all in whether they take this or not.'”
As a volunteer, she typically meets with families a few times, offering information on what the process may look like, encouraging clients to get on hospice care, and talking about death and the dying process, which is new to many people.
“I think that helps reduce fear,” she says. “My little piece of advice to family members is try not to let the fear and grief interfere in the days to come that you have left with your loved one. Try to really balance that fear and grief with love and gratitude.”
Rivers, who spent several years working in hospice, feels people aren’t supported enough through the end of their lives, which can be distressing. One dying man Rivers spoke to last year blurted out in front of his adult children that if he couldn’t for some reason access lethal medication under Washington’s law, he had hunting guns in his basement.
“The fear and distress this caused his children was so obvious and apparent,” Rivers says. “But the reality is people who are desperate can do dramatic things, and that’s one of the reasons this law is so important. People should not have to feel desperate.”
EAST SIDE, WEST SIDE
Of the more than 1,100 people who are known to have died after getting prescriptions for lethal medication under Washington’s law from 2009 through 2016, fewer than 150 lived east of the Cascades, according to data compiled by the Washington State Department of Health. Not all of those people took the medication.
About three-quarters of people who got prescriptions had cancer, while the rest were mostly people with neurodegenerative diseases such as Lou Gehrig’s disease or respiratory or heart disease.
People who use the law account for only about two of every 1,000 deaths in Washington, says Sally McLaughlin, executive director of End of Life Washington. Of the more than 54,000 people who died in the state in 2015, 166 used the medication, putting the number of deaths in that category slightly above the 141 people who died from the flu the same year.
“It’s not like it’s a rampant number of people, but the issues with access have to do with several things,” she says. “One is access to physicians who can or are able to prescribe life-ending medications in a more conservative environment. There are a lot of physicians who don’t even want to think about administering life-ending medications.”
Secondly, many doctors are not allowed to participate under the rules of their employers. Patients often have to form new relationships with doctors when they’ve got little time left.
Aside from the population size accounting for part of the difference, many people east of the mountains just don’t know the law exists, says Dr. Raleigh Bowden, who lives in Twisp and works as a volunteer medical adviser with End of Life.
“In my personal experience, a lot of people don’t know about the law,” Bowden says. “In fact I talked to one pharmacist [last] year who didn’t know we had a law.”
Patients need both a prescribing doctor and a consulting physician, who ensures the person isn’t being coerced. To be eligible, the patient must be a Washington resident, have about six months or less to live, and understand that there are other options, Bowden says.
Ideally consulting physicians see someone in person, but in rural areas, sometimes they have to use other options like electronic communication. From Twisp, Bowden will sometimes serve in the consulting role via Skype, as that part of the process mostly involves going over a checklist with the patient.
Attending doctors almost always want to see the patient in person, Bowden says, and it’s better if they’ve already had a relationship. Jones, Estes’ doctor, says it was the fact he’d known him for eight years that made him comfortable with the idea of supporting his decision.
“It was the perfect situation for me to say, ‘Wow, how could I deny this?'” Jones says. “Whatever my beliefs were, I was a physician in the state of Washington where this was legal. It took the politics out of it for me until the very end when I realized I might be at risk of losing my job.”
Aside from physicians, the medication itself can pose problems.
End of Life Washington recommends one of two prescriptions. The first and cheapest runs about $700, but needs to be made in a compounding pharmacy, which often isn’t available in rural areas, Bowden says.
The second and most expensive option involves opening up about 100 capsules of Seconal, once regularly prescribed as a sleeping pill, and mixing the contents with juice or something the patient can drink. With only one manufacturer making the drug anymore, the price for that dosage has gone up from a few hundred dollars when Washington’s law started to more than $3,000.
“If you’re poor — and I have yet to see an insurance company pay for this, though I hear some will — then the cost falls into the lap of the patient or their family,” Bowden says. “That’s a barrier if you come from a poor part of the state.”
The most common reasons Washington patients told their doctors they wanted life-ending meds was because they were losing autonomy and the ability to engage in activities that make life enjoyable, with 84 percent to 100 percent of patients citing those two reasons every year from 2009 to 2016, the most recent for which state data has been released.
In contrast, inadequate pain control or concern about it was cited by 25 percent to 41 percent of patients, and only 2 percent to 13 percent cited concerns about the cost of medical treatment.
For many years, Pat and Melinda Hannigan lived in Seattle, where Melinda was an artist and Pat worked as a tanker pilot in Puget Sound. Melinda was hanging some of her paintings for a show in Tacoma when she had a shooting pain go through her head and half of her face became paralyzed. What they initially thought was a stroke was actually due to a tumor, part of an aggressive cancer that would spread to other parts of her body.
Hannigan tried every treatment available, but after years of radiation, chemotherapy and other therapies destroying her body, her quality of life was awful, Pat Hannigan says.
She could barely swallow or speak, was put on a feeding tube for more than a year and was confined to a wheelchair. After going on hospice care in the home the couple had built in Twisp, she decided to take the medication.
When it came time, Pat had to drive an hour to Omak to get the pills, which cost them about $4,400 out of pocket.
Hannigan shared a final dinner with her kids and grandkids and was surrounded by family when she took the lethal dose in July of 2016.
Pat Hannigan says it was the right decision for his wife and was in keeping with her choices to accept or decline treatment at every step of her illness. Still, he hasn’t spoken to many people about the experience, in part because he doesn’t want to influence others, who need to make that choice for themselves. However, he thinks those who oppose the law don’t understand what it’s like.
“I hear people criticize it and I think to myself, ‘They have never been through an experience like this in their lives,'” Hannigan says. “It’s really easy for them talk based on their religious beliefs or their philosophical principles, but if you live through four years of absolute, total hell, with no hope, Death with Dignity is an awesome thing.”
NOT FOR EVERYONE
Policies about physician participation under the act vary even within the same system.
For example, Providence physicians in Spokane are not allowed to participate under the rules of the act in any way, even though physicians at Swedish, a Providence-affiliated hospital in Seattle, are allowed to if they choose.
“We respect the rights of patients and their care team to discuss and explore all treatment options and believe those conversations are important and confidential. As part of a discussion, requests for self-administered life-ending medication may occur, but our providers do not participate in any way in assisted suicide,” writes Liz DeRuyter, director of external communications for Providence Health & Services. “We provide all other requested end-of-life and palliative care and other services to patients and families.”
MultiCare, the other large service provider in Spokane, does allow its physicians to participate as attending and consulting physicians, and they may write prescriptions. However, no MultiCare physicians or pharmacies can help patients fill the prescriptions, meaning they need to find another pharmacy to fill it.
In her efforts to increase access, Linda Estes is working with Providence to change the policy at its Tri-Cities affiliate hospital to allow physicians to participate under the law, even if that means doing so outside of the scope of the hospital system. She’s been in contact with a Providence attorney about helping draft that policy, which is under consideration.
Estes says she’s passionate about making that change because when a family member is dying, the last thing people need is additional stress around end-of-life decisions.
“When you’re grieving so hard, you don’t have brain cells left to deal with this,” Estes says. “Having been through it myself, and having been put completely through the ringer, I want to make sure this is an easier process to do. Not to say it’s the right choice for everyone, it’s just our choice.” ♦
At 87, Maxine Stanich cared more about improving the quality of her life than prolonging it.
She suffered from a long list of health problems, including heart failure and chronic lung disease that could leave her gasping for breath.
When her time came, she wanted to die a natural death, Stanich told her daughter, and signed a “do not resuscitate” directive, or DNR, ordering doctors not to revive her should her heart stop.
Yet a trip to a San Francisco emergency room for shortness of breath in 2008 led Stanich to get a defibrillator implanted in her chest — a medical device to keep her alive by delivering a powerful shock. At the time, Stanich didn’t fully grasp what she had agreed to, even though she signed a document granting permission for the procedure, said her daughter, Susan Giaquinto.
That clarity came only during a subsequent visit to a different hospital, when a surprised ER doctor saw a defibrillator protruding from the DNR patient’s thin chest. To Stanich’s horror, the ER doctor explained that the device would not allow her to slip away painlessly and that the jolt would be “so strong that it will knock her across the room,” said Giaquinto, who accompanied her mother on both hospital trips.
Surgery like this has become all too common among those near the end of life, experts say. Nearly 1 in 3 Medicare patients undergo an operation in the year before they die, even though the evidence shows that many are more likely to be harmed than to benefit from it.
The practice is driven by financial incentives that reward doctors for doing procedures as well as a medical culture in which patients and doctors are reluctant to talk about how surgical interventions should be prescribed more judiciously, said Rita Redberg, a cardiologist who treated Stanich when she sought care at the second hospital.
“We have a culture that believes in very aggressive care,” said Redberg, who at the University of California-San Francisco specializes in heart disease in women. “We are often not considering the chance of benefit and chance of harm and how that changes when you get older. We also fail to have conversations about what patients value most.”
While surgery is typically lifesaving for younger people, operating on frail, older patients rarely helps them live longer or returns the quality of life they once enjoyed, according to a 2016 paper in Annals of Surgery.
The cost of these surgeries — typically paid for by Medicare, the government health insurance program for people older than 65 — involve more than money, said Amber Barnato, a professor at the Dartmouth Institute for Health Policy and Clinical Practice. Older patients who undergo surgery within a year of death spent 50% more time in the hospital than others and nearly twice as many days in intensive care.
And while some robust octogenarians have many years ahead of them, studies show that surgery is also common among those who are far more frail.
Eighteen percent of Medicare patients have surgery in their final month of life and 8% in their final week, according to a 2011 study in The Lancet.