A Better Death

by Ranjana Srivastava

  ‘So, it is cancer? I thought so from the way everyone was acting.’

  I couldn’t help quietly celebrating her perceptiveness. Her children looked shocked, but she didn’t bat an eyelid. Clearly, Yen had known all along but pretended otherwise because she wasn’t supposed to know.

  With a slight nod towards her children, she puzzled, ‘But they said the scans were normal.’

  ‘Mother, you must not worry,’ her son exhorted. ‘In our culture, we make peace with such things.’

  She replied calmly, ‘Of course we do, son.’

  The tense outburst I’d feared never came; Yen’s equanimity changed the tenor of the conversation.

  Yen was a widow and the more I spoke to her, the more I realised she wasn’t afraid to discuss her prognosis. This gave me the confidence to continue even though her children might have wanted me to stop.

  ‘It would help me to know what you’re thinking,’ I said.

  ‘I don’t want to live forever, but I want to be home for as long as possible.’

  I was touched by her simplicity. ‘That’s a goal we can work towards.’

  I advised against further tests and contacted the palliative care team. She displayed her acumen again when she said her children might have questions they’d rather ask in her absence and offered to wait outside.

  They explained that she’d nursed her ill husband at home with the help of palliative care, hence knew what to expect. This supported my view that people who have a positive experience of palliative care are more likely to welcome it in their own lives.

  The children had many questions for me. We discussed the trajectory of her decline and how they should tell the rest of their traditional family. As we spoke, I could see them shed their internal guilt and conflict, their anxiety slowly replaced by confidence in handling what lay ahead.

  A candid conversation about Yen’s illness was very valuable. Like many patients I meet, Yen knew something was seriously wrong; full disclosure allowed her to plan ahead. For her children, it lifted an unenviable burden of concealing a serious diagnosis while caring for her increased needs. The family members and professionals she encountered were spared from practising deception, which never really works.

  Later that day, the greatest surprise was a knock on my door.

  ‘Doctor, I want to thank you for saving me,’ the interpreter said after I had welcomed her into my office.

  I was puzzled by her effusive praise until she explained. ‘We belong to the same community, we pray together. I felt caught between loyalties although I always knew my job was to be your interpreter.’

  Her words forced me to realise that the burden of withholding news of a terminal illness wasn’t only carried by doctors and relatives but by unexpected others. Many relationships would have been tested by secrecy; however, Yen’s knowledge and acceptance permitted people to grieve together and find mutual consolation. In her last days, Yen stayed calm, reiterating her wish to be kept free of pain. She told her children that her work on earth felt complete and expressed the hope of meeting her deceased husband in the afterlife.

  Our conversation came full circle when her children later reflected that their experience had opened their eyes to a different way of handling death, although they confessed that traditional family attitudes would take time to change. I commended them, privately trusting that the memory of their mother’s peaceful death would help them navigate the future.

  The disclosure of a terminal diagnosis and the consequences of the disclosure are a live issue of debate in my work. In the 1960s, a staggering ninety per cent of oncologists admitted they would not disclose a terminal cancer diagnosis to a patient, believing that such knowledge would cause undue harm and detract patients from enjoying the twilight of their life. Just twenty years later, this view had become anachronistic and even insulting. Today, ninety per cent of oncologists say they would tell the patient. In an era of patient autonomy, full disclosure is seen as a moral, if not legal, obligation.

  While I believe we all need to come to terms with our mortality, patients have a right to determine what and how much they want to know and we must always be mindful of cultural sensitivities.

  Some people aren’t ready for difficult conversations, but no patient who wants to know more should be neglected. Doctors cannot be the sole arbiters of need, we must listen to our patients.

  WORKING IN A DIVERSE community has shown me that everyone deals with death and dying differently. It’s the norm in some cultures for family members to make important medical decisions on behalf of a patient. Some wives consider it a spousal duty that husbands should decide and I have encountered women who sought their husband’s explicit permission to even talk to me. Sometimes, filial piety dictates that decisions are made by adult children, although I’ve been sad to see teenagers struggling to fulfil these roles too.

  Withholding a terminal diagnosis can create medical, legal and, potentially, financial implications for the person being kept in the dark. But in other places, it’s the norm for the patient to be the last to know – if they are told at all. Some cultures have a sincere belief that patients who can’t change the outcome should be spared the worst news. It can be very confusing to know what to do.

  Medicine emphasises the centrality of the patient, but a terminal illness creates a ripple in the whole family and, as I grow older, I have become more mindful of this. When I experience conflict between doing what I believe is right and bowing to the demands of the family, I have put the patient’s best interest first. Since death is inevitable and irreversible, everyone deserves an opportunity to plan what remains of life, tie up loose ends and contemplate a legacy. This is what I say to people keen to shield their loved one from bad news and I am encouraged to find that this reasoning smooths out most objections.

  Planning for the end of our lives does not need grand connotations. In fact, consolidating bank accounts, withdrawing superannuation funds, reducing a mortgage, using ‘rainy day’ savings, and – no small thing – putting together a list of passwords and authorisations are important for the dying patient as well as those grappling with the very modern task of achieving posthumous closure in a very practical sense. This has become a major hurdle for many survivors in an age of restricted access to personal information and I frequently meet families whose grief is magnified by a lack of organisation and planning on the part of the deceased. Spouses are bewildered by unmentioned loans, unpaid expenses and bankrupt businesses. Children have lost their education funds and elderly parents and relatives have suffered unanticipated loss and responsibility. The bitterness and resentment that arise from these real inconveniences are easily avoidable.

  This is as good a place as any to mention the importance of making a will. In my experience, the absence of a will, an unclear or untraceable will causes some of the worst divisions in families. The potential for a problematic will to blast open minor cracks is confronting for onlookers, let alone those involved. In my career, some of the worst damage at the end of a patient’s life has concerned a will. I have watched physical fights resulting in security incidents, brutal arguments at the bedside, and the closest of relatives vowing to never speak to each other again. My most disturbing memory is that of a family that demanded a dying patient’s sedation be reversed so they could question his will. Of course, the staff refused but one can only begin to imagine the wounds of that family and wonder if they will ever recover.

  In the emotion and reflection triggered by death, it is easier to misunderstand, misjudge and overreact but hostile words cannot be taken back. Sibling rivalry is a common cause of dispute, as are perceived inequality, suspected favouritism, a late marriage and the presence of stepchildren. Social workers recommend that, ideally, the discussion about a significant will takes place in the lifetime of the patient so that all parties are aware of wishes and instructions. The person making the will should ensure that it is accurate, current and stored with a trusted person. Much time is spent, and so
rrow wasted, on tracing missing wills and pursuing intended benefits. The surprising thing is that it is often not the content of a will that loved ones fight over but the underlying principle. An essential part of dying well is to ensure that a will does not become a weapon. Again, this is made easier when we have understood our mortality.

  Even if we have few personal effects, our business affairs are uncomplicated, and our will underwhelming, we all deserve the right to emotional closure. Mostly, the wishes of my patients feature reconciliation, forgiveness, taking holidays, writing letters, recording a legacy, and praying for strength and resolve. We should all give these matters the highest priority in a life well-lived. And while it’s ideal to be more mindful of our priorities in our daily lives, the opportunity to make one final difference ought to receive the seriousness it deserves.

  When it comes to discussing prognosis, it strikes me that we are not so much frightened of death as much as its prologue – that people will give up on us; there won’t be any compassion, empathy or dialogue left. It should never be that way.

  We will never know what people want and how they feel if we fail to ask. Assuming nothing and being open to everything comprises the art of medicine.

  How people die

  While I thought I was learning how to live, I have been learning how to die.

  Leonardo da Vinci

  OUR CONSULTATION WAS NEARLY finished when Richard leant forward.

  ‘So, in all this time, no one has told me. How do people die?’ Richard was eighty-three, with a crown of snowy hair and a face lined with experience. He had declined a second round of chemotherapy and entered palliative care. Curious at heart, he also wanted good explanations.

  ‘What have you heard?’ I asked.

  ‘The usual stories.’ He shrugged lightly but his concern was unmistakeable, and I suddenly felt protective of him.

  ‘Should we discuss this today?’ I asked gently, wondering if he might want his wife present.

  ‘As you can see, I’m dying to know,’ he replied, pleased at his own joke.

  ‘How do people die?’ is one of the most common questions cancer patients ask of Google. Cancer is just one of many conditions that lead to a gradual deterioration and death, so the explanation is relevant to anyone who has a chronic illness – from organ failure to dementia – that causes progressive decline.

  While patients might google the answer, it’s rare for them to ask their doctor. I have seen firsthand how the resulting fear and misconception can easily replace understanding when death approaches.

  Some people are afraid to mention the subject, but others are firmly dissuaded from finding out more. ‘When you mention dying, you stop fighting,’ a man admonished his wife, but she suffered greatly for her lack of knowledge. Her religious family had kept her in the dark until days before her death she pleaded with me to tell her if she was dying.

  ‘Yes, you are,’ I said, holding her hand in mine. Her husband walked in just then and was furious at me for ‘extinguishing her hope’. She apologised with her eyes while he hurled abuse at the staff and then, to our disbelief, discharged her from hospital. He refused palliative care services and insisted that my words had killed his wife. Incidents like this hurt the broader cause of communication at the end of life, but more importantly, they heap unnecessary trauma on the dying patient.

  Many doctors feel reluctant to discuss prognosis because they can’t be certain and it’s also hard to convey bad news.

  However, the evidence shows that sensitive and truthful conversation and, where appropriate, a discussion about mortality, enables patients to take charge of their healthcare decisions, plan their affairs and steer away from unnecessarily aggressive therapies.

  It’s natural to fear that an awareness of dying will increase suffering, and no one wants to make someone’s dying days harder to bear. But it’s worth emphasising that the evidence points to greater sadness, anxiety and depression when there is minimal awareness of dying.

  Many of my patients describe short-lived unrest followed by tranquillity once their trepidation has been openly addressed. Where there is access, patients benefit greatly from palliative care professionals’ support.

  Not only is the dying process difficult for caregivers, but the burden also goes largely unrecognised. When people deteriorate over a number of years, prolonged stress causes carer exhaustion.

  ‘I haven’t slept well since Mum had her first stroke five years ago,’ a patient’s daughter said. ‘It’s a new normal.’ Even when her mother was in respite, she felt the need to supervise timely medication and appropriate care.

  Another carer who worked part-time to earn a living and cared for her terminally ill brother described the fear of losing him as a ‘chokehold’ on her life. She couldn’t afford to compromise her job but felt guilty about leaving her brother with volunteers when she worked. She was determined to keep him home for as long as possible.

  I saw in both cases how important it is for caregivers to be involved in conversations about declining health and expected death so that they are better equipped to deal with the dying process. How we experience the death of others also has a crucial bearing on how we deal with our own inevitable experience of death.

  Not all diseases and not all patients behave the same. The human body is so complex and remarkable that to predict too much is to invite error, but none of this should stop us from understanding the process of dying. Death from cancer and many chronic diseases happens via what can be described as a common final pathway. ‘Failure to thrive’ is a broad term for the deterioration at the end of life.

  Sufficient organ injury can lead to organ failure. Cancer is caused by an uninhibited growth of cells that expertly evade the body’s usual defences to spread, or metastasise, to other parts of the body. Metastases to the liver, lungs, or brain eventually suppress vital organ functions causing death. Liver disease, heart failure or emphysema can occur due to habits like excessive alcohol intake, repeated heart attacks or prolonged smoking. The liver and kidneys, in particular, are responsible for eliminating toxins and maintaining normal physiology. Usually organs of great reserve, their failure is associated with death.

  Chronic diseases including cancer result in the release of chemicals that suppress appetite and affect the digestion and absorption of food, leading to progressive weight loss. The interplay of these chemicals is poorly understood, and supplements don’t seem to match the work of substances the body produces naturally. This is why appetite stimulants rarely work in sick patients and sleeping tablets don’t reproduce the duration or quality of natural sleep.

  As the body fails, dehydration can occur due to a distaste for fluids or an inability to swallow. The lack of nutrition, hydration and activity causes loss of muscle, weakness and fatigue.

  Shortness of breath is a common feature of dying. Many cancer patients develop lung metastases. Heart and kidney failure result in fluid accumulation in the lungs. Severe emphysema depletes lung reserve. Consequently, many people can experience respiratory failure as ‘air hunger’, a feeling of not getting enough air to breathe.

  Diseases such as cancer, diabetes and major organ failure impair immunity, making patients susceptible to infections. These infections can overwhelm the body’s usual resources and treatment can be complicated by the difficulty of finding a safe antibiotic, especially in instances of liver or kidney failure. Fatal biochemical disturbances such as elevated potassium or calcium can occur due to underlying organ dysfunction.

  Neurological conditions are a common cause of death. Brain metastases can result in severe fatigue, seizures, paralysis, bleeding and behavioural disturbance. Swelling of brain structures causes progressive loss of consciousness and death. Non-cancerous neurological conditions, in particular dementia, lead to debility via different means. Patients progressively lose critical aspects of brain function that maintain normal behaviour, impulses, appetite and bodily habits.

  Essentially, our organs work in exqu
isite symphony and it’s difficult to isolate the impact of one problem from the rest of the body.

  The media commonly produces dramatised accounts of death, but contrary to popular belief, sudden and catastrophic death has become increasingly rare and the majority of deaths occur after predictable decline. This gives us an unprecedented opportunity to have a say in how we die.

  It can be overwhelming to absorb all the details about how our bodies fail but modern medicine is slowly turning its attention to achieving a better death. The field of palliative care is important to this quest. Nurses, social workers, psychologists, pastoral care workers, and even pets play a vital role in ensuring that alleviating physical discomfort and psychological distress takes precedence over futile medical treatment.

  Palliative care professionals are trained to tackle thorny questions, counsel patients and family members, and help them record a legacy. They normalise grief and reframe perspective. In areas where formal palliative care services are not available, it’s useful to check for individual providers who have the same expertise.

  It is sometimes feared that an introduction to palliative care is a replacement for effective medical care, but the evidence does not support this concern. Palliative care is not what happens when doctors have exhausted all other options. In fact, early introduction to palliative care while receiving active medical treatment has been shown to improve emotional health, quality of life and, in some cases, life expectancy, due to better attention to the whole person.

  Many patients make more deliberate decisions when they understand their prognosis. Palliative care professionals help bridge the gap of understanding between doctors and patients, prompting the former to reflect on the value of continuing treatment and encouraging the latter to review their goals in life.

  We have but one life and, as the end nears, we deserve an honest opinion, meaningful conversation, and compassion. Over 2000 years ago, the Greek philosopher Epicurus observed that the art of living well and the art of dying well were one. While we ought to be passionately interested in living well, we should care equally about dying well.