Her courage showed me assisted dying should be legal in the UK so the terminally ill can have some control
By Anonymous
I gained great insight into the courage and tenacity it takes to go to Dignitas.
Some years ago, while working as a district nurse at a GP practice, one of the receptionists came to tell me she had just taken a phone call from the son of a patient to say he had returned from the Dignitas clinic in Switzerland. His mother, who had recently been diagnosed with a neurological condition that would kill her slowly, and with loss of dignity and independence, had taken her life there.
The reception staff were shocked. I was shocked. My team was shocked. I was dismayed that this lady, who I had known for a number of years, had to go to another country to receive the care she wanted and to die earlier than she should have.
The following day her GP asked me what Lily* had been up to over the past few days. You can tell from this perhaps that Lily was a lady who made demands on the surgery team. The GP was upset when I told her what had happened, and contacted Lily’s son.
I had known this lady for a number of years and looked after her husband when he returned from hospital after surgery. Lily would turn up at the surgery immaculately dressed and would not leave until she obtained what she thought would help him. I would sometimes receive a phone call from the surgery asking me to come back from my house calls to see her. I was not the only person at the surgery with whom she could be quite insistent. Yet even as she frustrated us all, I found it noble the way she fought for what she thought was best for her husband.
After he died I saw her only occasionally. A few years later her health deterioriated and I became involved in her care. Occasionally I found it frustrating when, in the middle of a clinic or housecall, I would be contacted to say Lily wanted to see or speak to me. Many a day on my way home I would have to call into her house to reassure her or deal with a problem.
After her diagnosis she was matter of fact as we discussed plans for her care and how to deal with her condition. She was living on her own and had no intention of “burdening” her children. Despite the fact that she could be difficult, I found her likeable with a very dry sense of humour and fun.
I found out later that before she died she had bought a new outfit to travel in, and been to a favourite view she and her husband used to visit and to a favourite restaurant.
The point of telling this story is that I gained great insight into the courage and tenacity it takes to go to Dignitas and that there should be a way of assisting someone who is of firm mind to take their own life in these circumstances. Perhaps if she had felt she would have had control of the situation in this country Lily would not have found it necessary to take her own life at all; certainly she would have had a longer life. I feel privileged to have known a very brave woman, even if she could drive me to distraction.
When 90-year-old Norma Bauerschmidt was diagnosed with terminal cancer, her immediate instinct was to refuse treatment and instead find a more positive way to spend her final days.
So she embarked on the road trip of lifetime and unwittingly became an internet hit along the way, when the Facebook page about her travels started attracting more than 440,000 followers.
Ramie Liddle and her mother-in-law Norma Bauerschmidt
Mrs Bauerschmidt, from Michigan, spent just over a year on the road with her son Tim and his wife, Ramie Liddle, in their motor home, before her death last week.
They had traveled more than 13,000 miles (20,900km) and visited 34 states.
The family travelled more than 13,000 miles in their motorhome
The adventure began in July 2015, when, after a routine scan, Mrs Bauerschmidt’s doctors told her she had terminal cancer.
It was just two days after the death of her husband, Leo.
Her daughter-in-law said: “Tim and I had lived on the road for a couple of years, and when her husband passed we did what all families do and invited her to live with us.”
“She thought about it for about a minute-and-a-half and said, ‘Yes’. She was ready for an adventure.”
“One of the first things we did was buy a wheelchair for her, and that was her ticket to freedom,” said Ms Liddle.
“From that point, on we could go out and about on outings or do whatever she wanted.”
“It was just so my family would know where we were, but Norma was absolutely shocked when it took off,” she said.
Norma Bauerschmidt and her son Tim with a CBS camera crew
Ms Liddle said they had travelled from place to place, staying anything from a day to a month depending on how they felt.
And as Mrs Bauerschmidt’s Facebook following had grown, they had started to get invitations to lots of events and gatherings – including an Atlanta Hawks basketball game and countless people’s homes for dinner in the evenings.
The family travelled across the country harvesting hazelnuts in Friday Harbour in Washington, taking part in the St Patrick’s Day Parade in Hilton Head Island, South Carolina, visiting Yellowstone National Park and touring the Massachusetts coast.
They took a trip underground to visit the Consolidated Gold Mine in Georgia and Mrs Bauerschmidt even managed to fulfil one of her lifetime ambitions when she took a ride in a hot air balloon in Florida.
“In the last year, we have seen the best of the best of the people in this country,” she said.
Life on the open road
Ms Liddle said her mother-in-law had been a very humble woman with no grand needs, but she had had a very clear idea about what had been important to her.
“She had a very happy last year, and was a very simple woman who had never had any attention in her life,” she said.
“And that’s the beauty of this story – she was just herself.”
[A]t the end, Hugh Wallace still remembered there were 43,560 square feet in an acre.
Surrounded by family on April 19, just before a lethal cocktail was administered to legally end his life, making him the first Albertan to do so in this province, his son asked him the question he feared he may one day not be able to answer.
“Hugh always said if he got to the point where he couldn’t remember how many square feet were in an acre, he didn’t want to go on,” said his widow, Evie.
“At the end, he scored the winning goal in the last second of play.”
Alberta Health Services this week revealed 31 Albertans have so far been granted physician-assisted deaths, two dozen of those coming after the federal government lifted the legal prohibition against the practise in June, following a 2015 Supreme Court ruling.
Wallace, who at 75 had endured a quarter-century of multiple sclerosis before contracting aggressive lung cancer, was an engineer, and at his heart an uncompromising pragmatist, said Evie, who has since become an advocate for assisted death, speaking around the province.
“He wanted to go out with his brain intact,” Evie said.
“He didn’t want to go out in a coma, with a catheter and wearing Depends. That wasn’t him.”
Wallace, like a handful of trailblazers before him, had gone before the courts earlier this year seeking an exemption against the law outlawing assisted death in the Canadian Criminal Code.
In February, Hanne Schafer became the first Alberta woman granted the legal right to take her own life, but, after struggling to find a doctor in her own province, had to go to B.C. for the procedure. A second Alberta woman also went to B.C. to have a doctor assist in her death after a ruling in May.
But Wallace was able to find an Alberta doctor willing to help him die on his own terms, opening the door to others seeking the same release. As of Tuesday, the lead for medical assistance in dying preparedness for AHS, Dr. James Silvius, said two to four patients a week are taking advantage of the service, numbers he admits are somewhat surprising.
Evie said though her husband was suffering in the waning days of his life, he found some comfort in being able to have some control of how he passed on.
“It was an incredibly positive experience,” she said. “He was able to say his goodbyes to everybody and the doctors were fantastic. They were amazing human beings.”
Evie added the doctors involved in his care had meetings with both family and Wallace privately to ensure there were no signs of coercion before he underwent the procedure.
While her family’s experience was positive, the 73-year-old widow noted those who choose assisted death need to make sure everybody’s on the same page, and there are no lingering issues to resolve.
“It’s something for people to really look at their family dynamics before they go through with this,” Evie said.
“If there’s a lot of unfinished business in a family, it’s fertile ground for explosions.”
After 51 years of marriage, Evie said she is left with wonderful memories of the man she deeply loved, and not a shadow of regret about watching Hugh end his own life.
“At the end, we didn’t have any tears left in us. It was a good day.”
[D]uring the bleakest, most vulnerable period of their lives, terminally ill patients should be able to count on top-notch care and generous doses of compassion. But in one key area, Canada’s Catholic hospitals are letting them down.
At St. Paul’s Hospital in Vancouver, a dying 84-year-old patient who had requested a medically assisted death was required to go to another hospital, and his last day was pure agony as an ambulance shuffled him between institutions. St. Paul’s would not even permit him to be assessed for assisted death on its premises.
Catholic health providers across the country have said that while medically assisted dying is now legal, their faith does not allow them to participate. “These organizations neither prolong dying nor hasten death, and that’s a pretty fundamental value for them,” says the president of the Catholic Health Alliance of Canada.
We have argued before that individual choice must be the over-arching principle behind assisted dying decisions. While, in accordance with strict legal rules, a patient should be able to request assisted death, individual medical practitioners should not be forced to provide it against their own ethics.
But individual rights don’t apply to publicly funded institutions. If no individual health care expert in a Catholic hospital will personally support a medically hastened death, the publicly funded institution itself must still find a qualified practitioner who will. Forcing those in pain and mental distress to leave the site in order to obtain even an end-of-life assessment is simply inhumane.
In Ottawa, the situation is particularly complicated for Bruyère Continuing Care, a Catholic facility. Although organizations that support Catholic health care don’t want even a conversation about assisted dying to take place there, the Bruyère is the only publicly funded, complex palliative-care option in this region. To its credit, it appears to recognize that it must be more flexible.
A Bruyère administrator told the Citizen that if a patient requested information, the facility would be bound to acquiesce. If the patient were too ill to be assessed off-site – which is likely in palliative cases – the assessment, at least, could be done without moving the patient. Still, the person would have to transfer elsewhere to actually obtain a medically hastened death.
Provincial governments must step in – yet in Ontario, at least, regulations aren’t expected until 2017. Why should a publicly funded institution be permitted to refuse a service to the dying that is legal and that could be performed on its premises with considerably less agony than exiling the patient?
Force individual medical practitioners to end a life? No. Tell institutions to follow the law? Yes. A dignified ending shouldn’t be hostage to institutional beliefs.
[A]fter almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive.
It had been implanted in 1996, and for the first decade it ‘improved’ her life and symptoms — she had a form of hereditary heart disease.
The pacemaker sent regular electrical pulses to keep her heart beating steadily, and she was grateful for ‘being given extra time’, she later recalled.
However, she then had a heart attack and her health declined so that by 2014, her heart was working at just 10 per cent of its capacity.
Last year, Polish-born Ms Adamowicz, 71, who had lived in the UK for more than 30 years, revealed she wanted the pacemaker turned off, even though she knew it would lead to her death.
After almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive
It was like being ‘in line for execution and being told “not yet”, she said in an interview for BBC Radio 4.
‘It’s not about “I want to die”, I’m dying,’ she added.
After a series of medical examinations and psychological tests to determine whether she understood what switching off her pacemaker would mean, doctors agreed, and last October Ms Adamowicz went into a local hospice with her family for the pacemaker to be turned off – a procedure that took 20 minutes.
She described her body as feeling heavy and she felt a little nauseated – but she also felt at peace, her family told the BBC.
She slept through the night, returned home in the morning and died that night.
Her case – thought to be the first of its kind in the UK – raises profound ethical issues about when it is right to turn off someone’s pacemaker, or indeed withdraw other medical treatment such as dialysis for kidney failure, if that’s what they want.
In fact the law itself is very clear on this point, according to Miriam Johnson, professor of palliative medicine at Hull York Medical School.
‘A mentally competent adult has the right to refuse medical treatment, whether it is turning off a pacemaker or stopping dialysis, even if that treatment is prolonging their life and withdrawing it will lead to their death,’ she says.
‘By turning off the device, the disease or illness will kill the person, not the doctor.’
However, some doctors feel it’s uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature.
Some doctors feel that turning off a pacemaker is uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature
‘The difficulty with a case like this is that when a patient is dependent on a pacemaker, there is a direct connection between withdrawing the treatment and them dying within the next few hours,’ adds Professor Johnson, explaining that doctors’ role after all is to protect the vulnerable.
Around 35,000 patients in the UK have a pacemaker fitted each year. The device’s role is to keep the heart beating steadily – it gives it a boost by delivering electrical impulses so that the heart contracts and produces a heartbeat.
The computerised match-box sized device is implanted just under the skin, usually just below the left shoulder and electrical leads are then fed down a vein into the heart.
‘In a significant number of pacemaker cases if you suddenly took the pacemaker away, the heart would stop beating,’ explains Dr Adam Fitzpatrick, a consultant cardiologist and electrophysiologist at Manchester Royal Infirmary and Alexandra Hospital, Cheadle.
He adds: ‘It is very unusual for a patient to ask for their pacemaker to be turned off.’
Even if the patient is dying, a pacemaker does not need to be switched off, says the British Heart Foundation.
‘A pacemaker’s purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson for the British Heart Foundation
‘Its purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson.
But the picture is slightly different with other heart devices such as Implantable cardioverter defibrillators (ICDs) which are used to correct an abnormal heart rhythm rather than helping the heart beat steadily.
These devices, implanted in around 9,000 people in the UK every year, kick in when an abnormal heart rhythm occurs which can cause sudden cardiac arrest (where the heart stops beating).
Implanted under the collarbone as a pacemaker is, they work by firing a small electric shock into the heart to kick-start it (some pacemakers have this function too).
This might happen once every few months or not even for years.
However, this can be both painful and traumatic, especially at the end of life, and can lead to a prolonged and distressing death by continuing to give electric shocks.
In one particularly upsetting case reported in a US medical journal, a man suffered 33 shocks as he lay dying in his wife’s arms — the ICD ‘got so hot that it burned through his skin’, his wife later reported.
Implantable cardioverter defibrillators work a bit differently from a pacemaker, as they are used to correct abnormal heart rhythm with an electrical current
‘Dying patients often have multi-organ failure which can cause metabolic and chemical changes that may trigger arrhythmias, faulty heart beats and in turn activate the ICD,’ explains Dr James Beattie, a consultant cardiologist at the Heart of England NHS Foundation Trust, Birmingham.
‘If the device goes off when the patient is conscious, the shock is like a blow to the chest, causing discomfort and distress. It may also fire repeatedly.
‘This may result in a distressing death for the patient and distress for the families.’
Yet despite this suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research published in the Annals of Internal Medicine.
Furthermore, a 2011 survey by the National Council for Palliative Care suggested that only 40 per cent of UK hospices have access to the technology to deactivate the device urgently, potentially risking an undignified and painful death in hundreds of patients should they suddenly deteriorate.
Switching off the device involves holding a magnet over it, temporarily closing a magnetic switch incorporated in it.
To turn it off permanently the device has to then be reprogrammed remotely using a ‘wand’ attached to a computer.
Despite the risk of suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research
Medical professionals and families face a number of dilemmas when deciding whether to turn off an ICD.
One is the difficulty in accurately predicting when the patient is reaching the end of their life.
‘Determining this isn’t always clear, especially with a condition such as heart failure when patients may have survived crises over many years,’ explains Professor Johnson.
‘This can be complicated further if the patient is suffering from dementia and unable to make decisions about their care.’
There is also an understandable reluctance by patients and their families to take away anything that can prolong life.
‘Patients and their families frequently think of the device as entirely beneficial,’ says Professor Johnson.
‘There is also often unrealistic expectation about what doctors are able to do to keep people alive.’
Many doctors shy away from these conversations, too. A 2008 report from the National Audit Office found a significant lack of confidence in handling end-of-life care across all medical specialities — with cardiologists topping the league.
‘Given they are trained to save lives, talking about death can be seen as professional defeat,’ says Dr Beattie.
But if patients and doctors don’t have that conversation ‘we’re storing up trouble because decisions then have to be made at times of crisis and without planning’, says Simon Chapman, of the National Council for Palliative Care.
New guidance for patients and medical staff to guide them through the ethical minefield of withdrawing heart devices was published earlier this year in the journal Heart.
Just how difficult making such decision can be was dramatically highlighted in the case of Fred Emery.
When his health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months.
When Fred Emery’s health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months
The 73-year-old former manual worker from Kings Langley, Hertfordshire, had had the matchbox-sized device implanted in his chest following a 26-year battle with heart disease.
During that time he’d had two heart attacks, and had already undergone two triple heart bypass operations as well as having several stents (tiny metal tubes) inserted to prevent his arteries blocking.
However, Fred then developed heart failure and ventricular tachycardia — a potentially fatal heart rhythm
Having a defibrillator not only helped with the heart failure, but also any sudden cardiac arrest triggered by the faulty heart rhythm.
But Fred’s condition deteriorated and doctors suggested that as he was nearing the end of his life, it was time to turn off this life-line — to spare him and his family the ordeal of it repeatedly jolting his heart back to life when his body had reached the natural moment of death.
However, despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year. His family was angry that doctors had written him off before his time.
Despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year
‘It was awful when they told him to turn it off,’ his wife Shirley, 70, told Good Health. ‘Fred was taken ill at 4pm, and by the next morning the defibrillator was turned off. It was too soon to make that decision — he wasn’t himself and was under pressure to switch it off.
‘After it was reactivated, Fred had six more years. Without the ICD we would have lost him several years ago.
‘He kept it on until a week before his death. By then his heart was working at 15 per cent, he was in a hospice and there was no coming back so we made a decision to turn it off to give him some dignity at the end. He knew what was happening.
When a loved one is critically ill, hearing that it’s time for hospice care can be devastating news. On top of the emotional upheaval of coping with a terminal illness, you may be unsure what hospice care really is — and believe it’s just an indication your loved one will likely pass away.
Yet the time your loved one spends in hospice care doesn’t have to be sad — for anyone. In fact, says Toni Norman, the senior director of hospice operations for Brookdale Senior Living, hospice can be a deeply rewarding time of great comfort for patients and their families.
“Hospice care is not about waiting for someone to die, and that’s unfortunately a very common misconception,” Norman says. “The goal of hospice is to provide to a patient, who has a life-limiting illness, the physical comfort and medical care they need to stay in their home for as long as possible, while at the same time supporting their caregivers. The hospice team helps families by educating, supporting and identifying any needs they have, ranging from chaplain support to finding mortuaries and veteran benefits.”
The decision to begin hospice care is a communal one, with the patient, caregivers, loved ones and medical professionals contributing to the dialogue. “A terminal diagnosis from a doctor usually begins the process of seeking hospice care,” Norman says. “Also, as a family member’s health begins to decline due to illness, conversations about end-of-life care are proactive and compassionate.”
Brookdale Senior Living’s hospice care providers often encounter common misconceptions about hospice care. Norman offers the truth behind some mistaken beliefs:
* Hospice is for the last few weeks of life. The hospice Medicare benefit is for the last six months, if the disease follows its normal course.“Most people who enter hospice have done so because they’ve received a diagnosis of a life-limiting illness,” Norman says. “But people who enter hospice often live longer, and with a better quality of life, than terminally ill people who do not go into hospice. Many are even able to come off hospice service if their condition improves.”
* Hospice means giving up. Hospice is actually a commitment to a high level of care for a loved one. “It means making them as comfortable and safe as possible so they may enjoy time with their loved ones for as long as possible,” Norman says.
* Patients are heavily medicated. Patients receive medication under strict physician guidelines, and caregivers closely monitor comfort care protocols so each patient’s pain and symptoms are uniquely managed.
* Hospice patients can no longer see their doctors. Patients can continue to see any of their previous doctors. Rather than taking anything away, hospice adds a layer of medical support.
* Hospice care ends when a patient dies. Because hospice cares for the patient’s caregivers and loved ones as well as the patient, hospice team members continue their support for 13 months after the patient passes away. The hospice team provides grief support for the families and will continue to work with them to address any lingering questions, and to help identify their needs.
“The hospice team is comprised of the assigned physician and nurses to provide the direct medical care to the patient, while a chaplain, social worker and bereavement counselor provide additional support and education to families and caregivers,” Norman says.
Hospice ideally occurs in a patient’s home, whether that’s a personal residence or assisted living community. It is a Medicare-reimbursed benefit, and most private insurance providers do also cover some hospice costs.
“End-of-life care isn’t just about taking pain medications to relieve symptoms until death,” Norman says. “It helps people gain emotional strength and carry on with daily life, while improving the quality of life. The goal is to help patients and their families make every remaining moment as comfortable and enriching as possible.”
Never mind assisted-dying, our health care system needs to change the way it deals with the natural end of life
By Mohamed Dhanani
Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. “The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions,” writes Mohamed Dhanani. “This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.”
I’ve spent much of my career in the health care field, but it took a very personal experience to drive home just how poorly prepared health care providers are to help us through the one certain life-experience that awaits us all: death.
It happened in a hospital in southern Ontario. My father-in-law, Ijaz Ahmad, who lived with insulin-dependent diabetes for 35 years, went into the hospital for a partial foot amputation due to a bone infection.
Prior to surgery, a routine diagnostic test was performed requiring dye to be inserted into his bloodstream. After the surgery, the dye put him into kidney failure while it was being metabolized. Within a day of the surgery all of his organs started to fail and he was put on life support for what we were told would be two to three days so his organs could rest and strengthen — after which, we were told, “the doctors would bring him back.”
He spent the next 18 days on life support. And what became clear over that long 18-day ordeal is that what had clearly become the end of his life would have been unnecessarily prolonged depending on which of the eight doctors we interacted with was treating him that day.
Like so many families who have had the difficult but essential conversation with an aging parent around their end-of-life wishes, we had spoken with him about his wishes. He was clear he did not want to be on life support.
The eight doctors who treated my father-in-law all had different ideas about what those wishes meant, and how involved the family should be in making treatment decisions. This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.
Some of the doctors acknowledged his wishes but said life support was an essential part of the treatment plan; it was just a temporary measure to aid in his recovery. Others made very little effort to consult with us, and another outright refused! Another doctor assured us he would “bounce back,” though nurses told us this was increasingly unlikely and that the doctor was prone to sugar-coating discussions with families.
Because of this inconsistency, different members of my family were hearing different things — and that made it even more difficult for us to make a decision we all felt comfortable with. Finally, I pulled aside the latest doctor treating my father-in-law and asked him for an absolutely frank and direct discussion. Only then were we able to make an informed decision that respected my father-in-law’s wishes and provided as much comfort as possible to our family.
On my father-in-law’s 18th day on life support, and on what was to be the final day of his life, a new doctor was treating him. This doctor had trained and practiced in the U.K., and had only recently started to work in Ontario. His European training and experience gave him a different perspective on end-of-life care, and one for which we were grateful.
In Europe, the societal conversation on end-of-life care is more advanced than in Canada — they have grappled publicly with these essential issues of decision-making in health care for many years, and physicians have therefore become more comfortable discussing end-of-life decisions with their patients and families.
Not only is this an essential conversation we need to normalize as families and as a society, it is something our health care system must take on as an essential part of its work. All doctors must be trained to discuss end-of-life care in a direct and compassionate way with patients and their families. This will only become more important as people live longer, and as their health issues become more complex as they reach the end of their lives.
Over the last few years, Canadians have engaged in an impassioned debate on assisted death, a debate that culminated in landmark — and controversial — legislation in Parliament. But assisted death is just a small part of the issue.
As my family’s experience illustrates, end-of-life care and the difficult discussions surrounding that care are too inconsistent — inconsistent between institutions and inconsistent between doctors within a single hospital. It is something we can and must fix.
Surrounded by family and friends my father-in-law peacefully passed away within minutes of removing the breathing tube. He was 66 years old. May his soul rest in eternal peace.
