I commonly meet adults in their thirties and forties who have never seen someone close to them die and are overwhelmed by their first encounter of death. The collision of sadness, guilt and helplessness are all too human but if we have never thought about being mortal, we will fail to prioritise the needs of the dying.
As a student watching deaths made worse by disagreements amongst relatives, I often used to wonder why doctors just didn’t take charge. With time, I have realised that this is virtually impossible without the instructions of the patient or the consent of relatives.
Such is the momentum of medicine to intervene that even slight hesitation has the power to stall end-of-life care. Common examples include withdrawing antibiotics, withholding chest compressions, and stopping artificial nutrition.
I can recall many instances where actions guided by emotion not fact have led to decisions that have not prolonged survival but prevented a peaceful death. Increasingly, dying well requires a concerted effort for all parties to unite. We owe this to the people who rely on us.
The role of assisted dying
Euthanasia, or voluntary assisted dying, is often in the news these days and this is an appropriate place to talk about it because, for some people, a good death may need to be an assisted one.
Assisted dying is legal in various international jurisdictions and the law will come into effect in the Australian state of Victoria in June 2019.
The specific eligibility criteria that patients must meet to request access to assisted dying are important but broadly speaking, a patient must be deemed by several experts to be suffering from an incurable, advanced and progressive disease that will lead to an imminent and inevitable death. To request assisted dying in Victoria, patients must be over the age of 18 and have decision-making capacity. Mental illness and disability alone are not grounds for a request and patients must satisfy all other criteria. There is no provision for people to leave instructions about assisted dying in an advance care directive, and no one else can initiate a request on the patient’s behalf.
Once approved, the patient is prescribed medication that causes sedation, paralysis and death. The process is usually quick and painless. In some places, the patient must swallow the medication; in others, a helper is permitted to administer oral medication, or a doctor can inject a lethal drug. The death can happen at home or, in some instances, a facility.
Wherever assisted dying has been mooted, it has not been without furious debate. To its advocates, it means an end to the suffering associated with death and dying. It honours an individual’s dignity and avoids prolonging the inevitable. The evidence thus far shows that most patients who are prescribed the medication don’t use it but value the security of having an option to end their life if their suffering becomes unbearable.
To its detractors, assisted dying presents moral and practical challenges. Is it ever right to deliberately end a life? Who decides that a life is not worth living? Can patients who feel like a burden be coerced to die? How can doctors loyally save lives and end lives?
At its heart, assisted dying questions the meaning we attach to our lives and what we consider to be a life worth living.
As someone whose professional life revolves around the subject of dying, I am deeply interested in helping people achieve a better, less fearful death and accept that assisted dying may be a part of this. However, I make the following observations.
The vast majority of my patients are afraid of the symptoms associated with dying, particularly pain but also nausea, confusion and fatigue. They mourn the loss of independence and with it, dignity. Many ward off the thought of dying and fear to discuss it openly. Their worst imaginings added to the myths they hear push them into a spiral of anxiety. Above all else, such people require comfort and reassurance. Palliative care does not eradicate every symptom, rarely banishes all existential distress and, in some people, simply falls short of its goals, but it helps more people in more ways to have a better death.
In all my years of being an oncologist, people have pleaded with me every day to prolong life but have rarely asked to end life. For those rare patients, life had truly become not worth living, but what’s compelling to me is that so many others, faced with declining health and an existence that observers may find unacceptable, express an affinity for life and its myriad offerings.
Growing older has helped me understand that people who are well are not always well-suited to judge the lives of the seriously ill. For some of my sickest patients, whose lives might be dismissed as empty, simply sitting in their garden watching people go by or receiving a visit from a grandchild is a profound source of contentment. My youngest patients hadn’t bargained for premature death but, in the throes of a terminal illness, still hang on to a family’s embrace and the aroma of a home-cooked meal. Some patients demand full cognitive and physical capacity as a precondition to a good life; many adjust to more modest expectations.
Utterly humbled by my learning, I no longer assume and always ask, ‘What does life mean to you?’
Assisted dying is always going to be a deeply personal and philosophical exercise. Doctors should strive to serve the patient’s best interest and ensure that people are equipped to make important decisions about how to die. This includes providing clear and non-judgmental information about assisted dying.
Our choices will vary but even before we arrive there, we must think carefully, choose wisely and not be afraid to believe that we can achieve a better death.
Being a good advocate for the dying
In the end we only regret the chances we didn’t take.
Anonymous
I RECENTLY ATTENDED A TALK in which a veteran intensive care physician declared that in nearly fifty years of patient care, he had yet to encounter a good death. With the audience suitably startled, he proceeded to explain that judicious decisions could often avoid futile care and allow the patient to die peacefully but even then, the reality of human lives is such that there is always someone left behind. Truly, if we consider all the people involved in our lives who might be impacted by our death, the notion of a good death doesn’t seem as clean-cut. In particular, the doctor reflected, he felt sympathetic towards the staunchest advocates who felt the loss most keenly.
Listening to him, I thought of my own patients. When they died, their loved ones knew at an intellectual level that their suffering had come to an end, but it didn’t stop them from mourning the loss and wishing it weren’t so. If their relationship had been rich and generous, they simply longed for the deceased; if the bonds were frayed, they regretted not having the chance to do better.
Sometimes, in a twist of fate, I end up caring for the terminally ill spouse or a close relative of a deceased patient. I am conscious that seeing me again must bring back sad memories, but I am touched to hear patients say that they are consoled by a familiar face. This has allowed me to observe that how people cope with their own decline is intimately associated with how they helped a loved one navigate the end of life.
As the bereaved know, there is no protocol for navigating loss, but there are some things it helps to remember.
We should keep the focus on the dying person, something obvious to say but easy to overlook. There’s a time to set aside differences and aim for quiet reflection, calm and – where necessary – open forgiveness. It may be too late to expect long discussions and significant decisions.
One of the hardest things I found was deciding how much of my life to share with a dear friend who was slowly dying. As she grew progressively weaker, I was still involved in interesting activities that she loved but could no longer do. After vacillating between feeling insensitive at revealing too much and disingenuous for withholding things, I cautiously started sharing my experiences and was pleasantly surprised to find how much she enjoyed a normal conversation that treated her like a person.
I have also learnt that, as important as it is to be agile in conversation, it’s vital to know when to be quiet. The latter is
something most of us find hard, but people at the end of life often lack the energy to be an attentive host. Nevertheless, they are consoled by company and satisfied by feeling included in the human chain even if they don’t say much.
We know a lot about welcoming a newborn to the world but struggle to tend the dying.
I sometimes field calls from people who are anxious about visiting someone at the end of life. Close friends and family members suddenly feel tongue-tied and even professionals can feel tense. But we should know that it’s possible to overcome our hesitation and create meaningful exchange.
The art of any conversation lies in recognising cues. We are not obliged to be falsely jovial or unnecessarily distracting and, in fact, it’s perfectly reasonable to ask how we can make ourselves useful. For instance, we might be better at reading aloud and telling jokes or we’d prefer to file bills and prune the roses. The key is being present and being attentive. These are valuable tips for nurturing any relationship but especially those at the end of life where there is an imbalance of power between the patient and the caregiver.
I once looked after a terminally ill widow who was acutely aware of her nephews’ apprehensions at every visit. To encourage them to keep coming, she assigned small tasks to each one such as opening her mail, folding her laundry, and massaging her feet. She laughed that the jobs helped dissipate their nervousness and made their visits enjoyable. The nephews were proud of their contribution and I admired her alacrity in shaping her circumstances.
A young woman I knew had always been the life of social events but when she had a serious accident with life-threatening complications, her friends banded together to hold small parties at her house. She joined them when she felt well, otherwise would happily rest in a chair. She regularly hailed the joy she found in her friends’ gesture and I thought that her friends would always be proud of creating a meaningful ritual to sustain them through difficult times.
Families should be mindful that even experts can feel strained when looking after the dying. I once knew a young woman, Kara, whose parents were determined to take her home. On the night Kara died, the community nurse assigned to attend her happened to be on one of her first independent shifts and became visibly upset at the sight. The nurse called for help and made Kara comfortable, but not before her parents were distressed by the thought that they had deprived Kara of expert care by bringing her home. I explained to them that sometimes the professional detachment people expect can falter for very human reasons but Kara had benefited from the family’s love and unity.
Appropriate, skilled and compassionate care at the end of life should be a basic right and we should strive to ensure that the dying receive the best possible care by advocating for those who cannot advocate for themselves.
We can speak quietly and purposefully about what our loved ones need. We must possess the facts and understand that being tired or stressed as a caregiver does not excuse hostility or violence towards professionals, which is becoming a noticeable problem in healthcare. Calculating the urgency of a request is always helpful. For instance, prompt pain-relief is critical, but a leaky shower can hardly be fixed overnight. Many people desire a private room but not everyone can get one and staff have a duty to prioritise.
When we think of advocating for the vulnerable and dying, we would do well to remember that the most meaningful gestures are not grand; often they are exceedingly humble.
Those who earn the gratitude of the dying tend to be those who apply balm to their dry lips, stroke their feet, adjust their pillows, bring their drink a little closer, and are willing to simply sit by the bedside. To care is to be present.
Another area where advocates can make a crucial difference is in helping dying patients avoid futile care. A colleague of mine once cared for a man who was estranged from his family and found himself struggling to make some serious decisions. His neighbour noted his predicament and offered to help. I heard how the neighbour’s mere presence and her gentle probing helped elicit the patient’s values and enabled him to make a confident decision to enter hospice.
No one likes to see a loved one struggle and many of us want to be an advocate but are afraid of not understanding the language of medicine. But this isn’t what patients need. The best advocates listen to people. They use their acumen to ask thoughtful questions that shine the spotlight on the best interest of the patient. They object when necessary but realise that the best way to help is through dialogue.
Healthcare is full of people who know what to do. Advocates help us decide whether it’s the right thing to do.
In order to avoid conflict at the end of life, it’s important for each one of us to have thought ahead about what we want. At our most vulnerable and weak, we benefit from advocates who can contribute their knowledge, strength and temperament to our welfare. Therefore, we must appoint our advocates carefully and deliberately for there are few things more onerous than being asked to make highly consequential decisions that we didn’t expect to make.
Advocating for our loved ones at the end of life is one of the most honourable tasks we can perform. With goodwill, foresight and a belief in the right of the dying to receive the best end-of-life care possible, we can look forward to acquitting ourselves with pride and satisfaction.
Ensuring the whole family gets help
A house divided cannot stand.
The New Testament
A FAMILY DOCTOR AND I were discussing the condition of a mutual patient who had resolutely declined community services including palliative care despite the inexorable progression of his disease.
‘You know, he doesn’t believe he is sick,’ she said.
‘He has an incurable illness!’ I protested.
‘That’s not what he hears at his appointments.’
‘Well, that’s unbelievable,’ I countered. ‘I keep telling him things look bad.’
‘I’m just letting you know what he thinks,’ she said. ‘As far as he’s concerned, you’re all wrong.’
‘But that’s so irritating.’
‘Don’t worry, we’re all talking to him.’
But it wasn’t working, I fretted.
I recalled her stricken call, when she had sent her 45-year-old patient, Andy, for tests. Having chastised herself for over-investigating, she was horrified to find that he had cancer.
I remembered the first time I met Andy. He’d come with his wife while her parents sat in the waiting room distracting the couple’s children. His face was white with shock and she barely spoke.
I advised him that fortunately his cancer was operable, and I’d do everything in my power to keep him well. He looked at me pleadingly and my heart melted. A week ago, the couple had been planning nothing more taxing than a vacation – now, their lives had taken an unimaginable turn.
After his surgery, Andy received chemotherapy with great struggle. Consequently, he was overjoyed when, nearly a year since diagnosis, he was finished with treatment. Patients attend their first post-treatment visit with much anticipatory dread and while it’s difficult to predict at that early visit who will go on to enjoy long-term good health, it’s important to commend patients on their achievement. I did this and promised to keep a close eye on Andy, not knowing that his cancer would return just months later, exhibiting a vengeance that made me fear for his survival. I lacked the will and words to express the foreboding.
‘The scans worry me,’ I finally murmured.
‘I know you’ll fix it,’ he said.
Andy’s confidence never faltered, even when things started going wrong, and he defiantly assumed the challenge of outliving his prognosis. On one hand, his will was admirable; on the other hand, it was exhausting, especially for his relatives, who saw the deterioration he refused to admit.
Andy received every available treatment but within a few months his liver began failing, a radiologist glumly commenting that it contained more tumour than normal tissue.
I tried to talk to Andy about his future, but neit
her signal nor dialogue could dissuade him from believing that it was only a matter of time before I’d find a cure. Every doctor has a patient in denial who tests the boundaries, but this one was especially hard.
Inevitably, the day came when I thought it wasn’t ethical to treat a patient in his weak state, but Andy put it down to a blip, because he was still able to run his business. Admittedly, an older patient would have felt much worse, but I feared that Andy was deceiving himself and not allowing his family to reconcile to his inevitable death.
Andy’s wife, Mellie, was a psychologist who understood Andy’s poor prognosis and his limited insight into the future. She wanted him to move towards acceptance, so they could prepare their family for a time without him. She was frustrated that, by avoiding any mention of dying, aggressively making future plans, and flatly rejecting palliative care input, he was stymying her efforts at preparing ahead.
Concerned, I turned to Andy’s family doctor for help and witnessed a fine example of what a good relationship with the family doctor can achieve at the end of life.
Andy’s doctor began by encouraging him in for a consultation instead of collecting scripts from the front desk, and she turned these occasions into a chance to explore Andy’s understanding of his illness. Through attentive listening and sensitive probing, the doctor uncovered that his nonchalance concealed a mistrust of his specialists. He expressed a common fear among patients that missing even a single treatment due to fatigue would be seen as a sign of capitulation, which would prompt his doctors to give up on his care. As awkward as it was to hear what Andy thought, it helped me understand what I needed to do. The doctor and I began to speak regularly, underlining the one important thing that I couldn’t offer Andy – a relationship that preceded his cancer diagnosis.
A Better Death Page 13