Here in Rhode Island, a state representative has introduced a bill to allow patients who are dying from a terminal illness to take their own lives with medication prescribed by a physician.
Representative Edith Ajello, a democrat from Providence, adamantly defended her legislation by arguing that it was about “compassion” and not “assisted suicide”.
The bill, which she says is modeled after the Vermont and California laws, will allow those with a prognosis of death within six months and meet the legal requirement of competency, can choose to end their lives. It would require a 15 day waiting period after the first request and after that, a second request can be made in writing and witnessed by two others, as long as one of the witnesses is not an “interested person” (someone who may have something to gain by the decision).
If this bill comes to vote and passes, Rhode Island will join California, Colorado, Hawaii, Oregon, Vermont, Washington and the District of Columbia where “death with dignity” statutes are already law. At the time of this blog, no action has been taken.
And just across the border in Connecticut, an aid-in-dying bill was again raised in 2018 in the Connecticut General Assembly, but didn’t even make it out of committee. A major obstacle to this legislation has been the Connecticut State Medical Society which has opposed supporting patients’ choices at the end of life.
The State of New Jersey is also a step closer to approving their own legislation that will permit terminally ill patients to end their lives.
Before we continue, let’s define the difference between terms that are used in this debate. As the war of words heat up in states seeking to implement such laws, you will hear the terms “physician assisted suicide” and “voluntary euthanasia” being used.
Physician assisted suicide entails the doctor making lethal means available to
the patient that he or she will use at a time of their own choosing. A method most often cited as the “preferred” model.
Voluntary euthanasia requires that the doctor take an active role in the process of carrying out a patient’s choice to end their lives, usually using a lethal dose of a medication delivered intravenously.
When asking medical professionals about the process, the overwhelming majority state that “voluntary euthanasia” is emotionally difficult for them as they have a hand in the actual death where “assisted suicide” is far more comfortable as they only provide the tool and the person carries out the act.
The use of the word “suicide” is also something medical professionals struggle with when it comes to ending the life of a terminally ill patient. Dr. E. James Lieberman told the Psychiatric News that, “The term ‘assisted suicide’ is inaccurate and misleading with respect to the death with dignity acts. [Ending the life of a terminally ill patient] and the typical suicide are opposites. Terminally ill patients who ask for a doctor’s help in dying are not making the desperate, impulsive choice associated with suicide.” Some terminally ill patients, who support death with dignity acts, have similar opinions.
Louise Schaefer, an advocate for Death with Dignity Acts, with a terminal illness said, “All I am asking for is to have some choice over how I die. Portraying me as suicidal is disrespectful and hurtful to me and my loved ones. It adds insult to injury by dismissing all that I have already endured; the failed attempts for a cure, the progressive decline of my physical state and the anguish which has involved exhaustive reflection and contemplation leading me to this very personal and intimate decision about my own life and how I would like it to end.”
Likewise, terminally ill Jack Newbold, who said, “I’m not committing suicide, and I don’t want to die. I was upset by media reports that I intend to ‘kill’ myself. I’m not killing myself; bone cancer is taking care of that. I may take the option of shortening the agony of my final hours.”
And just how are those final hours shortened?
Many who we have spoken with about someone ending their own life think that there is a “couple of pills” that someone takes to aid with their death, but it is much more complicated than that. In reality, the dosage of drugs for doctor-prescribed suicide is a huge quantity of barbiturates (sedatives).
Secobarbital capsules and pentobarbital (usually known as the brand name, Nembutal) liquid — (not to be mistaken for epilepsy medication phenobarbital) have been used either alone or in combination for physician-assisted suicide or euthanasia. These are the same drugs used in injectable forms for animal euthanasia.
The safety and efficacy of these drugs are not at issue as they appear to induce a peaceful, quick and uneventful death as evidenced by use around the world. Other options do exist, whether in combination or alone, but have limited evidence of use in euthanasia. Some drugs that cause excessive muscle relaxation and respiratory distress can end life, as can some pain killers commonly used in palliative care.
Drugs can also be used that fatally lower blood sugar levels, causing a heart attack, or blocking messages from the brain to the muscles, causing paralysis.
And just what is the cost of dying? In some cases, it can be quite expensive.
According to the “Death with Dignity” website, Pentobarbital in liquid form cost about $500 until about 2012, when the price rose to between $15,000 and $25,000. The price increase, they say, was caused by the European Union’s ban on exports to the United States because of the drug being used in capital punishment, a practice that they don’t agree with. Users then switched to the powdered form, which cost between $400 and $500.
A lethal dose of secobarbital (brand name Seconal), prescribed under death with dignity laws, costs $3,000 to $5,000. Due to the increase in the cost of this drug, a mix of other medications have been developed to induce death. A phenobarbital/chloral hydrate/morphine sulfate mix produces a lethal dose that is similar in effect to Seconal. The cost of this alternate mix is approximately $450 to $500.
A second alternative, consisting of morphine sulfate, Propranolol (Inderal),
Diazepam (Valium), Digoxin and a buffer suspension costs about $600. A compounding pharmacy is used to prepare each mixture.
And just why have the costs of these drugs risen so dramatically? It appears as the death with dignity movement gains momentum, the costs of death through this method has gone up, meaning that there is even a profit to be made in the business of assisted suicide.
Now back to the debate.
Here in the United States, attempts to legalize terminating one’s life is not a new issue and can be traced to the early nineteenth century. During this time, the subject of euthanasia became such an issue that New York State passed the first anti-euthanasia law in 1828. Although the debate did quiet down, it continued to bubble under the radar screen until the turbulent 1960s when the advocacy for euthanasia once again grew.
By the 1970s, hospitals and nursing homes began to establish committees to discuss this subject and began pushing advance health directives (living wills) for those unable to make their own choices. California was the first state to legalize these policies in 1977 and other states quickly jumped on board.
Then in 1990, the Supreme Court approved the use of non-active euthanasia. Oregon became the first state to approve the Death with Dignity Act in 1994, allowing physicians to assist terminally ill patients die who were not expected to survive past six months. Washington followed in 2008 when voters approved the act.
But outside this country, voluntary euthanasia is legally available in Canada, Belgium, Colombia, Luxembourg, the Netherlands and Switzerland. As legislators look towards these countries for some guidance, we may be surprised just how far these countries have gone.
Assisting someone end their lives has not been a crime since the early twentieth century, as long as “selfish motives” were not involved. These motives are described as pressuring someone to suicide in order to inherit valuables or to avoid providing financial support to a family member. The person doing the assisting was required to be an adult who was competent and be the person to provide the tools for death.
After the 1980s, the law was newly interpreted as legal permission to establish non-profit organizations that would enable assisted suicide for mentally competent adults as part of an advanced healthcare directive.
Today in Switzerland, there are two organizations called “Exit”, based in Geneva and Zurich, that provide the service for Swiss nationals only. But two other companies, Dignitas and Lifecircle, exist for foreigners who travel to the country for this service.
Since 1981, both voluntary euthanasia and doctor-assisted suicide have been part of the culture for those suffering unbearable pain with no hope of recovery. It was made legal in 2002 under guidelines agreed upon by both legal and medical ethics professionals. Reportedly, most Dutch medical providers prefer euthanasia rather than be a part of assisted suicide. What is
different here is that there is no requirement to be “terminally ill” nor is there a waiting period.
Records indicate that seven of ten euthanasia deaths are the result of cancer, 4% due to dementia (the patient may choose this early in the disease while they are competent or can be a part of advance care directives), and 3% are elderly individuals who are just “tired of living”.
What does raise eyebrows in The Netherlands is that children as young as twelve, who are terminally ill, can request to die with parental consent. The positive is that the palliative services in this country are considered to be the best in Europe.
Both voluntary euthanasia and doctor assisted suicide have been legal since 2002. The palliative care services and the option of medically assisted suicide are well integrated in Belgium. Euthanasia can be provided to all competent adults who are suffering irreversibly, but if the person is not terminally ill, there is a one month waiting period before the act can be performed. Since 2014, competent children can receive euthanasia if they are terminally ill and in great pain. About 4% of all deaths in Belgium are due to doctor-assisted dying.
Although voluntary euthanasia was passed in 2009, only a small number of its citizens have chosen to die by this method. This may be misleading, however, since Luxembourg is a tiny country.
Although its version of the Supreme Court approved voluntary euthanasia in 1997, the first death by this method did not occur until 2015. The law there requires prior approval of euthanasia by a government committee.
Quebec adopted the legislation for doctor assisted suicide in 2014 followed by the federal government of Canada's acceptance in 2016. As of today, any competent adult who suffers from a “grievous and irremediable condition” and whose death is “reasonably foreseeable” can receive medical assistance to die. Canada, excluding Quebec, allows either medically assisted suicide or euthanasia. In Quebec, only euthanasia is allowed.
Both those for and against the death with dignity debate do agree on one thing, palliative care – which consists of intense pain and symptom management, psychosocial supports for the patient and the family, and assistance with difficult decision making – should be a standard of care for all seriously ill patients.
Those who support the death with dignity laws argue that even with the best
managed palliative care, there will always be a small percentage of patients where their symptoms become intractable despite the most skilled interventions. Therefore, physician assisted suicide needs to be an instrument in the toolbox for those who work in hospice care.
Critics of assisted suicide agree that in some cases even the best palliative care does not prevent some patients from suffering and note that in such cases, doctors have prescribed medication for aggressive management of pain and other symptoms, in doses that may unintentionally hasten death, something that has had wide ethical, legal, and professional acceptance. The difference, they say, is that it is not state sponsored, and this is where their major concern lies with physician assisted suicide laws.
They argue that the laws that allow assisted suicide are wide open to abuse, citing one of the issues being the tracking of a prescription that has been written and given to the patient. Where is the follow up and the accountability for the drugs, they ask.
And what about a third party who may benefit from the person’s death? Might they administer the drugs without the patients consent? As written, the laws currently do not require consent at the time of death, only consent to obtain the medications. So, who is really in control of the time of death, the patient or the third party?
They also point out that an underlying message being sent is that some lives are not worth living. As more states approve measures like this and they gain a wider acceptance, the elderly, disabled and those who are dependent upon others for care may see their lives as not being quite as valuable as those who are younger and functioning. Doctors who take part in this, they say, are communicating hopelessness, not compassion.
Even more concerning, they say, is that elder abuse is lurking just below the surface of these laws.
It is a documented fact that elder financial abuse cost its victims $2-3 billion annually and can serve as a catalyst for other types of elder abuse. Once society accepts assisted suicide as a norm, it may put elders at risk of being pressured, coerced or forced into suicide.
They also point out that suicide is not medical care. As our baby boomers age and health costs continue to escalate, we are seeking alternatives to the high costs of long-term care. The current push for seniors to age at home makes sense – for those who have a home to age in. But what about those who do not? With nursing homes closing at a rapid rate due to low reimbursement rates from Medicaid, will it become a “duty to die” rather than a “right to die”?
Finally, lets talk about the world-wide moral breakdown of societies, hastened, some say, by the use of social media. Two decades ago, video sites like “Jackass” where people performed stunts that could have resulted in serious injury or worse, was viewed by millions. Like those who drive by auto accidents with one eye open – it's not pleasant to look at, but there is curiosity. Today, these type of stunts and videos have become the norm, with individuals even becoming “internet stars” and making a lucrative living by creating shocking content. Eventually, constant exposure to those things that are initially shocking end up desensitizing us.
Case in point, assisted suicide has just become a form of entertainment online.
This year, a 29-year-old female in The Netherlands named Aurelia Brouwers, decided she wanted to die. She did not have a terminal disease but suffered from psychiatric illnesses, including severe anxiety, depression, eating disorders and psychosis. She had a history of suicide attempts and had spent almost three years as an inpatient at a psychiatric hospital. She even served time in prison for arson.
Brouwers decided to use Facebook to document her death. Needless to say, her page became very busy and received overwhelming support from her followers.
Her final post, read and followed by thousands, stated, “I’m getting ready for my trip now. Thank you so much for everything. I’m no longer available from now on.”
According to the Observer newspaper, she lay down on her bed to die,
“clutching a toy pink dinosaur and listening to her favorite music”, then she “drank her prescribed medication as close friends gathered round.”
One of those friends, Sjoukie Willering, stated, “She asked me to lie next to her. She had a smile on her face, and then she went softly into sleep, it was very serene and calm. It was beautiful.”
And a woman who was diagnosed with chronic and persistent mental illness also received the publicity she seemed to seek. Brouwers spent the days before her suicide saying goodbye to friends and working on a television documentary that was broadcast after her death. Cameras followed her as she made plans to be cremated and even rehearsed her funeral for all to see.
And the problem, with all the media coverage and the use of social media, Brouwers death is being portrayed as a heroic and a brave solution to severe suffering. A message that is not lost on those on both sides of the argument.
Her death has triggered a fierce debate in The Netherlands, where as we noted earlier, the most permissive laws around assisted suicide exists. Many are asking if a line has been crossed where it has become socially acceptable for death to be an option for conditions that are not immediately terminal.
Supporters, however, see this as an opportunity to make assisted suicide and euthanasia laws even broader, citing that no real public outcry occurred over this incident. In the cross-hairs are the elderly and those with dementia.
Professor Agnes van der Heide, an end-of-life expert at Erasmus
University in Rotterdam, states that public opinion surveys show “a substantial proportion of our population think the law should be even more liberal – especially with regard to dementia. Many who see their parents or grandparents in the grip of advanced dementia wish to opt out of such a bleak end-of-life scenario for themselves."
Doctors are still holding the line against this stating that there exists a moral abhorrence at ending the life of a defenseless person who doesn’t understand that they are being killed. But it gets even worse.
Pia Dijkstra, a Dutch politician and member of the centrist-liberal party, has
proposed a law allowing anyone over 75, without a diagnosis of physical or mental illness, to request euthanasia.
“There is a growing number of older people who want to decide themselves how their life should end – how, when and where, and in a dignified way. They feel their life has been good but it’s now complete. They want control. The existing euthanasia law doesn’t meet their needs,” she said.
Dijkstra said the proposal had the support of 60-70% of the public, with some arguing for no age restriction. “I have had an enormous number of emails and letters from elderly people who want this possibility. But it’s important to have a good debate. And it’s so important to let older people know they are valued by society and that this should be their choice.”
So according to this politician, for older people to know they are valued by society, they should have a right to take their lives. This thinking comes very close to the “duty to die” argument.
Have these laws reached a point that they are now on a slippery slope?
Well, consider this. When the use of marijuana first became legal, it was initially approved for medical use with a promise that it would not go beyond that. Shortly thereafter, recreational use was approved. Now in Colorado, law makers are being pressured to approve the use of hallucinogenic mushrooms. A slippery slope?
According to Governor John Hickenlooper, there are problems with legalizing drugs, like an increase in black market sales and dealers flooding the state, but “we now have $250 million a year in tax money (from pot sales) we can put toward (dealing with) that.”
In Rhode Island, Jai alai and the lottery came online in 1976, allowing individuals and their money to be spent on gambling. This was followed by legalized slot machines and Keno in 1992 with a promise that other games of chance would never be allowed in the state. Then came casinos and sports betting, and very soon, its residents will be able to gamble while soaking in a bathtub by using an online app. Another slippery slope?
“I am hoping we can get up and running relatively quickly,” said Senate President Dominick Ruggerio. “And I think there is going to be a lot of people who will support online gaming because I think it will be more convenient... I’d like to see it passed quickly so they can start implementing it and they can get revenue this fiscal year.”
Notice the words, "convenience" and "revenue".
Granted, assisted suicide is a whole world different from the issues of legalized
marijuana and gambling, but when the bottom line is more about filling the state’s coffers than for the unintended consequences of these laws on individuals, how much of a stretch is it to be concerned that physician assisted suicide may be seen as an option for saving a state money through ending the lives of those with dementia and needing long-term care?
There is certainly room for disagreement on the debate of physician assisted suicide, but even those advocates for death with dignity laws should view past performances by lawmakers with a critical eye.
Dr. Joseph Marine, an associate professor of medicine at Johns Hopkins University School of Medicine, says that moving too quickly in the direction of physician assisted suicide is dangerous.
“If we allow this form of euthanasia into our health care system, it will inevitably corrode and destroy the values that define the health professions and lead to public distrust in them,” he said. “[Physician assisted suicide] has led to wider forms of euthanasia in every country that has adopted it. No one will be immune to its long-term corrosive and destructive effects on the health care system.”
Dr. Marine feels that state legislatures should spend more time and resources on palliative and hospice care programs and “not legalizing assisted suicide.”
It’s a debate that will continue and one that we need to watch very closely.
Attorney Connelly practices in the area of elder law. This area of law involves Medicaid planning and asset protection advice for those individuals entering nursing homes, planning for the possibility of disability through the use of powers of attorney for the both health care and finances, guardianship, estate planning, probate and estate administration, preparation of wills, living trusts and special or supplemental needs trusts. He represents clients primarily in the states of Rhode Island, Connecticut and the Commonwealth of Massachusetts. He was certified as an Elder Law Attorney (CELA) by the National Elder Law Foundation (NELF) in 2008. Attorney Connelly is licensed to practice before the Rhode Island, Massachusetts, Connecticut, and Federal Bars.