As college students, we don’t consider the topic of death frequently, let alone the process of dying. However, it is a universal themethat does not discriminate against anyone, no matter their age.
Throughout history, the process of dying is represented differently across cultures and religions. While some religions, like Buddhism and Hinduism believe it marks the beginning of rebirth or reincarnation after death, others, like Christianity, believe it marks the beginning of a journey to Heaven.
Regardless of the beliefs, to fully understand the process of dying and its aftermath, we must examine how the dying process has changed over time.
Throughout our history—particularly recently with medical advancements—the human race has looked far and wide to answer a complex question: What is a natural death? With so many life-sustaining technologies to potentially keep us alive indefinitely, many don’t know what a natural death entails anymore.
Universities like ASU offer courses exploring the cultural and religious aspects of death and dying.
While the biological process of dying is universal, the behaviors associated with expressing grief are very much culturally bound. Courses like these offered at universities allow students to learn how cultures have developed ways to cope with the process of dying.
Sally Johnson, a professor of psychology at Glendale Community College, believes that all students should study the cross cultural aspects of death.
“By learning about the way different cultures and religions treat the dying process, we can gain more insight into how they deal with the heartache and pain that comes along with death and how it manifests itself in the funeral/death process,” she said.
However, it is important to remember that the process of dying has drastically changed over the past several decades with the development of modern resuscitative technologies. It seems as if a “natural death” has no place in our society anymore.
The idea of a natural death is merely a reflection of the social and scientific context of the time that death took place in.
When we picture a natural death, we envision an individual lying in bed surrounded by loved ones, taking their last breaths in a place of comfort and homeliness, a sight of peace and tranquility often dreamed of in literature.
However, with the help of modern medicine and innovative technology, our perceptions of natural death have now changed.
Thanks to modern medicine, diseases like polio, scarlet fever and others have been rendered preventable, treatable, or far less common now. This has led to a dramatic extension of life.
However, these new technologies have also been used to prolong the life expectancy of individuals with terminal illnesses, such a cancer.
While the idea of prolonging life might sound like a good thing, it often forces patients, their loved ones and their doctors to make difficult, painful decisions.
In some cases, when patients have no hope of surviving, we use technology and drugs to simply keep them alive in a biological sense.
Families and doctors may feel as though they need to exhaust every available treatment or medication to prolong the dying process, however, that can be a naive and selfish outlook.
But what we don’t understand is that there is a difference between being alive and living. Medicine can’t cure everything, but we often act as though death is optional.
The dying process is usually centered around the elderly, who are approaching there last few months of life due to natural causes. When younger individuals do die, it’s usually the cause of an accident or life-threatening disease.
However, individuals of all ages, especially students should be aware of the cultural significance of death, especially as we begin to cope with the loss of loved ones or go into professions where death is common.
We must recognize the limits of our human knowledge and technology and accept the fact that eventually, all of us will die. As morbid as it sounds, it is a natural process of life and should not be pegged as a taboo topic.
[P]atients can now use their smartphones to share their wishes for end of life care — whether or not they want to be intubated or have CPR, for example — with ambulance crews, loved ones, emergency-room doctors and hospitals.
No more fumbling for a piece of paper, signed by the doctor, to show health-care providers when a terminally ill loved one is rushed to the hospital. Patients in New Jersey can have their wishes become part of their electronic medical record and shared on mobile devices.
The online version of the “Practitioner Orders for Life-Sustaining Treatment” was launched Friday, almost five years after New Jersey authorized the use of a paper form for frail and severely ill patients. The online version will be part of a registry maintained by the New Jersey Hospital Association, with strict safeguards for patient privacy.
“We’re moving beyond having a green paper hanging on the refrigerator,” said Health Commissioner Cathleen D. Bennett, speaking of the paper version of the POLST forms. When patients articulate their preferences, it helps them to live on their own terms at the end of life, she said.
They can also express their goals for care, ranging from a full attack on their disease to palliative or comfort care. The form is signed by both the patient and the doctor or advanced-practice nurse, and is considered a medical order. Emergency personnel can follow it whenever the patient can’t speak for himself.
Joseph Carr, NJ Hospital Association Chief Information Officer, demonstrates how the emPOLST can be accessed electronically and how it can help inform care.
“Through this tool, more health-care providers will have immediate access to critical information they need to treat the patient according to the patient’s health-care preference,” Bennett said. “Patients with smart phones also will be able to share their electronic POLST form with a new physician, specialist or emergency-room doctor.”
In New Jersey, about 11,000 patients a year created POLST forms at each of the hospitals that participated in a study of it, said Joseph A. Carr, chief information officer for the New Jersey Hospital Association, who demonstrated the electronic version.
At a ceremony at the Villa Marie Claire Hospice in Saddle River, Bennett and Betsy Ryan, president of the association, signed an agreement for the association to become the online repository for the POLST forms. The villa, a former convent, is an inpatient hospice for 20 patients that is part of Holy Name Medical Center.
Talking about the end-of-life is one of the most important conversations a family can have, said Michael Maron, president of the medical center. The hospice’s decade of work has taught him that patients feel comforted and empowered when they are able to communicate their choices clearly and effectively, and they are understood by caregivers and loved ones.
Among doctors, there seems to be broad consensus about the relevance of double effect in end-of-life care.
Debate over euthanasia in Australia has been renewed by the recently failed bill to legalise it in South Australia, and the Victorian government’s announcement it will hold a conscience vote on assisted dying next year. As usual, parliamentary debates have spilt over into expert probing of current practices in end-of-life care.
From doctor and writer Karen Hitchcock to the Australian Medical Association, there seems to be broad consensus about the relevance of a doctrine called “double effect” in end-of-life care.
Double effect, in the most general sense of the term, is the view that a doctor acts ethically when she acts with the intention of bringing about a good effect, even if certain undesirable consequences may also result.
While doctors agree double effect is a useful principle, there is disagreement about how it applies in end-of-life situations.
On one account, the doctrine can be applied to both palliative sedation and euthanasia. The former is the alleviation of symptoms in terminally ill patients using sedative drugs. The latter is the active killing of a patient by administering sedative barbiturates, such as Nembutal.
Some doctors suggest that, under the double effect doctrine, palliative sedation can be applied more liberally. The relief of pain can actually result in the death of a patient, which means palliative sedation can cover many of the cases of individuals seeking euthanasia.
The argument then is, because palliative sedation does the same work as the euthanasia law is intended to cover, we needn’t create a law to legalise euthanasia; we need only clarify existing law on double effect and palliative sedation. I’ll call this the “minimalist thesis”.
But there is a strong argument to suggest the minimalist thesis is untenable. Euthanasia and palliative sedation are categorically distinct. This is because the intent – which is the operative word when it comes to moral philosophy and to legal principles – of doctors in each of the interventions is different.
In palliative sedation, doctors administer pain relief with the primary intent of relieving pain. In the case of active euthanasia, doctors administer barbiturates with the primary intent of ending the patient’s life.
What is double effect?
The so-called doctrine, or principle, of double effect is a philosophical concept often employed when evaluating the morality of actions. It rests on the basic conviction that in morality intentions matter, and that a person’s intentions are what make their actions moral or immoral.
There are various formulations of the doctrine, depending on which ethical, religious or legal tradition you are approaching it from. We can nevertheless posit a generic definition along the following lines:
The doctrine of double effect states, where certain criteria are met, a person acts ethically when acting to bring about a good or morally neutral outcome – even though her action may also have certain foreseen, though not intended, undesirable consequences.
In the end-of-life context, for example, the ethical act to bring about a morally neutral outcome would be administering pain medication. The potentially unintended consequence would be death.
An important phrase in the above definition is “where certain criteria are met”. Depending on the tradition you work in, these criteria will vary. There is, nevertheless, broad consensus about the following criteria:
We cannot intend the bad effect
The “bad” of the unintended consequences cannot outweigh, or be greater than, the intended “good” outcome
The good effect must not be produced by means of the bad effect.
The bad of the unintended consequences cannot outweigh, or be greater than, the intended good outcome.
It is generally said doctors should have, as their primary intent, the relief of suffering and not some goal that, while perhaps acceptable, is not within the purview of the role of doctor – such as ending a person’s life.
Doctors draw on double effect in serious cases where a treatment has certain foreseen, undesirable consequences. This may be minor or major injury to the patient, or even perhaps the hastening of death.
Palliative sedation v euthanasia
Doctors typically administer palliative sedation only in the last days or hours of a patient’s life. This involves using sedative drugs to relieve acute symptoms of terminally ill patients where other means of care have proven ineffectual. These symptoms are known as refractory symptoms, and include vomiting, delirium, pain and so forth.
The sedative drugs that doctors administer – the most common of which are benzodiazepines such as Valium – render the patient unconscious or semi-conscious. Often these are administered in gradually increasing doses, depending on how long and to what extent doctors want to sedate the patient.
Sometimes the drugs administered may hasten death. Crucially, though, the primary intent of doctors is to relieve unbearable or otherwise untreatable suffering.
In the case of euthanasia, however, to state it tersely, a doctor or other health-care professional seeks to kill the patient. Medical euthanasia is administered in response to suffering, be it of a patient who is terminally ill, afflicted by intense and prolonged physiological suffering, or by psychological or existential suffering.
Muddying the waters
Monash bioethicist Paul Komesaroffand others have suggested that, instead of legalising euthanasia in Australia, we should clarify the law on double effect and palliative sedation.
The minimalist approach has the added benefit we needn’t get involved in placing arbitrary restrictions on end-of-life care – as legislators are wont to do with euthanasia law.
Yet this argument equivocates on the nature of palliative sedation. In cases where patients still have six months to live, or where their suffering is broader than ordinary refractory symptoms, it is not permissible to provide palliative sedation – at least, not according to existing ethical guidelines.
If this were to be done, the primary intention would not be to relieve suffering but rather to hasten or actively bring about the patient’s death. Even if one wished to suggest our ultimate intent were to relieve suffering, we would nevertheless be using the bad consequence as a means to that end. This violates one of the generally agreed upon criteria employed when invoking the doctrine of double effect.
We stand to lose rather than gain from muddying the waters around double effect and palliative sedation. The real question legislators need to consider is this: should the state sanction the active killing of terminally ill patients by their doctors? We do ourselves a disservice to pretend euthanasia is anything other than this.
[K]athryn Martin, registered nurse and Faculty Lecturer in the Faculty of Nursing, doesn’t attend the funerals of her deceased patients. But she knows nurses who do.
“You become quite close with the families,” Martin says. “It’s okay to have feelings about the situation. I respect other nurses attending funerals, but I personally don’t (attend). It’s important to set your own boundaries.”
Martin says decades of working in the intensive care unit have made an impression on her. The ICU is a hospital unit dedicated to treating patients with severe and life-threatening conditions. She remembers cases from years ago with vivid detail, and feels she has made a difference in the lives of her patients.
Nursing is a complex and dynamic profession. RNs work with patients and families around the clock, and are often advocates for patients and their families. Nurses advocate for time, information, increased pain medication, spiritual services, and any other needs families may have.
One of nursing’s significant challenges is transitioning patients with life-limiting illnesses — illnesses in which death is the expected outcome such as cancer, heart disease and dementia — from curative to palliative care. The goal of curative care is to modify a disease, either through management or working towards a cure. It can involve intense medication regimens, 24/7 nursing care, repeated hospital stays with limited visiting hours, and it isn’t often provided at home. Palliative care, alternatively, focuses on comfort as opposed to modifying or curing a life-limiting condition. It is provided both at home and in health facilities such as long term care centres or hospitals. Common aspects of palliative care are reduced invasive procedures and increased
pain medications.
When the transition between curative to palliative care goes well, the grief impact on families is minimized and the work experience can be satisfying for health care professionals. When it doesn’t, many walk away with feelings of hurt, failure, and of letting loved ones or patients down — people close to patients often interpret the transition as medical professionals letting patients die. An article in the Journal of Palliative Medicine reports that during the five years previous to 2012, at least half of the physicians surveyed had experienced a patient’s family members, another physician or another health care professional describing their palliative methods as “euthanasia, murder or killing.”
“Transitioning from curative to palliative care is anything but a static process,” says Kristin Jennings, an RN experienced in palliative care. “Unfortunately, (to some) it feels as though our medical system gives up hope.”
In spite of treatment that can be harsh, palliative care is not diagnosis-centred, but person-centred care. It focuses on the needs of all key players: patients, families, caregivers, and loved ones with hopes of creating the most possible value in a person’s last days, weeks, or months. It is a broad category, encompassing anything from the removal of life support to increased pain medications.
The increasing prominence of palliative care in the past decade is a marker of change in medical thinking towards a more holistic model of care. Palliative methods are now initiated much earlier in treatment than they have been in previous years and are starting to be provided concurrently with curative methods. Comfort matters, and it matters throughout the entire experience of illness.
“In an ideal world, palliative care would be initiated when an individual is diagnosed with a life-limiting illness,” Jennings says.
The value of a “good death” is frequently discussed in health care literature and public media. Value lies not only in how we live, the arguments go, but also in how we die. A good death can mean a week on the beach with loved ones — it can also mean minimizing time spent breathing with a ventilator. The scope of end-of-life care is broad, but value can be created in both situations and all in between.
“There are only two things we can guarantee in life: birth and death,” Jennings says. “The processes of being born and dying are dynamic and unique experiences that deserve equivalent amounts of respect, care, compassion and love.”
“Death has the potential to be a beautiful experience.”
Jennings chooses to attend patient funerals — she says they keep her humble.
“I get to share grief, see an individual’s beginning, middle and end, and see how many people were impacted by their life.”
The most crucial factors in a smooth transition between levels of care are time, information, and communication. Martin says she’s seen physicians give families three to seven days to process information in the smoother transitions she has participated in.
“Lack of time is the worst thing that can happen,” Martin says. “Resistant family members need to be able to ask questions. You need to take any and all questions. You need lots of people to interact with resistant family members and provide consistent information over those days.”
When a transition is abrupt, key players feel they are letting their loved ones down. Family meetings, multiple conversations with care providers, and openness to questions are all necessary.
“(Relatives) feel they are letting their loved one die … They need lots of information about the pathophysiology of what is going on,” Martin says.
Second-year nursing student Olivia Roth says she most likely will attend the funerals of her patients.
“Attending funerals will allow me to grieve, and make the process feel full circle,” says Roth.
Roth had an “eye-opening” experience caring for a palliative patient in her first year.
“It really transformed the way I thought about nursing … It was hard for me to understand that switching from curative to comfort measures would allow her to die with dignity,”Roth says.
Palliative care can also be provided in final moments when an individual is dying suddenly, or after a short period of illness.
When a patient dies suddenly, or without a period of anticipation by the family, there are greater feelings of loss than when a death is foreseen. Family members and other loved ones experience increased stress and higher rates of morbidity in the two years following a sudden death.
Loved ones sometimes turn to requests for potentially inappropriate treatment. Potentially inappropriate treatments are those that may have a small chance of treating the patients, but ethical considerations justify not providing the treatment. Some examples of potentially inappropriate treatment could be extended intubation, or life support beyond a reasonable timeframe.
Responding to requests for potentially inappropriate treatment can create moral, ethical, and legal dilemmas for health care professionals. Potentially inappropriate treatment can include ICU stays when prognosis is poor. Intensive care unit stays are costly in terms of dollars as well as discomfort, and can cause potentially traumatic experiences. Forced intubation, intravenous and arterial lines, time spent breathing on a ventilator, and decreased ability to communicate all add to the dramatically uncomfortable experience of an ICU stay.
Finances are also considered. Health care professionals never hope to have a conversation regarding the ethical and financial benefit of keeping somebody’s loved one on life support, but public dollars are sometimes a factor to be considered in medical decision making.
“It’s important to consider resources,” Martin says of one of the hardest conversations professionals and families face. “Access to intensive care beds, nursing care, ventilators, medications … It’s all very expensive.”
Many health authorities have developed policies and timelines to facilitate transitions from curative to palliative care, and the denial of requests for potentially inappropriate care. One significant aspect of the grief experience can be anger towards professionals, but evidenced-based, health authority-wide timelines can lessen feelings of anger towards and abandonment by the health care team.
Along with the families of patients, health care professionals can also walk away from end-of-life experiences with pain and grief.
“It’s exhausting, both emotionally and physically,” Martin says. “But when (the transition) goes well, it’s one of the most satisfying experiences you can have. You feel like you’ve made a difference.”
[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.
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.
FOR a parent whose child is facing death, the future looks bleak. But at the world’s first children’s hospice, staff ensure that life is celebrated, as our writer reports.
At the end of the main corridor in Helen House, the world’s first children’s hospice, lies the Little Room. It’s smaller than the other eight bedrooms, simply furnished, and it’s the place parents dread.That’s because it’s where they come when their child has died: the room is kept cold to preserve the body and give the family time to say their goodbyes and give their last hugs. Of course, there are tears here but also laughter and smiles: the room has been decorated as a fairy castle and a spaceship over the years. One time, on a boiling hot day, a grieving family took a break for a water fight on the grass outside.
“We could hear squeals from the parents and siblings of the child who had died,” recalls Clare Periton, chief executive of the hospice in Oxford. “It’s moments like those that capture what we’re about here. Death happens, but the living goes on, there’s still room for fun, and no one judges you.“Parents who come here with their children are scared by the Little Room, but afterwards say it made all the difference to be able to have time with them to say their goodbyes and come to terms with the fact that their child is cold.”
The normalising of death as part of life is what makes hospices so special
We can’t see the room today because it’s being used, but we visit the Starfish Room, the equivalent in Douglas House, the sister hospice for 16 to 35 year olds next door. The room is at the centre of the seven-bedroom building. There’s a discreet door at the back that leads directly outside via a long corridor.It was designed for coffins to enter and leave by – but no one can ever remember it being used. “The young people tell us they came in through the front door and they will go out of the front,” says Clare. This normalising of death as part of life is what makes hospices so special.On the bed in the Starfish Room is a lovingly hand-stitched quilt featuring a parable that explains the room’s name. A man spends his days rescuing beached starfishes by throwing them back into the sea. “What possible difference are you making?” someone asks. “There are so many stranded starfish.”“It makes a difference to this one,” the man replies, holding up a single starfish.“It’s a philosophy to live by,” says Clare. “You can’t change the world completely but you can make a difference to your bit. This is what we are trying to do here.”
Helen House was the world’s first children’s hospice when it opened in 1982. It was the result of a friendship between a nun, Sister Frances Dominica, and the parents of a terminally ill two year old, Helen Worswick, desperate for respite care. It was built in the grounds of the convent; Douglas House was added in 2004.
‘You can’t change the world completely but you can make a difference to your bit’
It should be a subdued place because what could be more upsetting than a child’s death? But there’s a bustling, playful atmosphere. “It’s full of laughter and smiles. Staff aren’t moping about, there’s none of that tilted head earnest sympathy,” laughs Clare, who took over six months ago but has worked at the hospice for 11 years having trained as a nurse.“Children need to play and have fun, no matter what is going on in their lives.”There’s a huge, airy playroom at the heart of the modern building. There’s a teacher on site, a games room, a hot-tub room (where parents can take a well-deserved break), music room, sensory room and two family flats. There are 250 children on the books at any one time: some come here for end-of-life care in the last few weeks, others with life-limiting conditions come for respite care a few times a year to give their parents a break.Staff go to incredible lengths to make children’s last days happy and memorable: one 21 year old with cystic fibrosis was desperate to see the new Paddington film before he died, but the DVD hadn’t yet been released.Someone managed to get hold of a copy, it was couriered up from the company in London and a red carpet duly hired for the full premiere experience. Just yesterday, a six-year-old girl got her dearest wish: a trip round Oxford in a horse and cart.
As well as what Clare calls the “sparkly” experiences, they organise ordinary trips to the pub or to Costa Coffee for very ill or disabled young adults who want a slice of normal life.
‘We know more than anyone how your whole life can change in a split second’
At the moment there are four children in Helen House, plus one in the Little Room, and another three children waiting for end-of-life care, being visited at home by outreach nurses.There are 160 staff, ranging from doctors to cleaners and fundraisers, a teacher, music therapist, aromatherapist, play specialists and an army of volunteers. It costs £5.1 million a year to run both houses; Government funding makes up 12 per cent, but the rest is fundraising: £1 million comes in from 37 charity shops.Fundraising was challenging last year, possibly due in part to the negative publicity surrounding their founder, Sister Frances Dominica, who faced historic sexual-abuse allegations. She was under investigation but the CPS dropped the case. She denies the allegations, but had to resign from her role as a trustee of the hospice last December.All 54 children’s hospices in the UK have a similar struggle for funding: on average they receive only 21 per cent of their costs from local Government and health commissioners; the rest comes from fundraising. Many hoped David Cameron would introduce more central Government support, as his late son Ivan was cared for at Helen House and he has spoken fondly of the care the family received there. But nothing has happened as yet.
Perhaps it’s because as a society we don’t like to talk about children dying – unlike in past generations where child mortality was common.
“My great grandmother had 16 pregnancies,” says Clare. “They were used to child mortality. But now it’s a subject we don’t like to discuss.”
We adults may have lost this matter-of-fact attitude to death, but young children haven’t. “We’ve heard siblings talking in the playroom. One will say, ‘My sister has died,’ and the other will say, ‘Oh, my brother died,’ and they will debate ‘which one is the deadest’ or who died first,” says Clare. Her own daughters, aged eight and 10, recently had a discussion about how you would find a coffin for a tall man. “You could fold him in half,” suggested one.
Staff find that children at the hospice often know they are going to die, even if adults have not told them. Outreach nurse Shirley Jones recalls a boy of five who was nearing the end of life, but his parents were convinced he didn’t know.
One day he said he wanted everyone to go up to his bedroom and give presents to his brother, whose birthday was in a couple of months. They were puzzled but did it. He died later that day. “Whether they have knowledge or whether they are picking up on cues from family – sensing anxiety, we don’t know,” says Shirley.
Children are often accepting of death (rarely do nurses hear gravely ill children ask, “Why me?”), but teens and young adults are often angry, perhaps because they have more comprehension of what they are going to miss.
When it comes to end-of-life, children often know what they want. One seven-year-old boy who knew he was going to die was determined only to allow staff to give him limited help when the time came. He even had his wishes laminated to the equipment next to his bed.
When the time came, they abided by his wishes, even though his parents must have wanted to try anything to prolong his life. “His mum was incredibly gracious. She was so terribly upset but she did not ask us to carry on. I had so much admiration for her,” recalls Clare.
When a child dies, the impact on parents is all-consuming; bereavement teams at the hospice are often in touch with them years afterwards. “When a child dies, parents have lost the future,” says Clare. “We help them find a new normal, because it’s never the same again.”
By rights, her work should be gruelling and sad, but she loves it. “I’ve only had three bad days in 11 years here – and only one of them was to do with a death. Working here makes me treasure time with my own children. It makes me listen to them, hug them and spend as much time as possible with them. We know more than anyone how your whole life can change in a split second.”
