A Better Death

by Ranjana Srivastava

  Josip and I talked at length about the grief, regret and myriad other emotions experienced by loved ones when someone is dying. These emotions are complex, intense and unpredictable. We often aim to shield our children but for adults, too, the turmoil can be deeply unsettling.

  MY WORK EXPOSES ME to the best and the worst of grieving families. I have learnt that in all but the rarest of instances there is hope for reconciliation, but it starts with an essential belief that we have a finite time to address the ties that matter to us. I’ve witnessed the transformative effect of a phone call, a hug or an apology, and I’ve seen a heartfelt letter or the smallest gift change the dynamic. It’s okay to take the step that feels the safest.

  Some of the best people to help start an important conversation when time is short are chaplains, social workers and counsellors and I strongly recommend their services to families. The difficulty of finding reconciliation should never dissuade us from taking the first steps.

  While it’s common to feel helpless as we decline, there are some things that we can control.

  A family meeting is a good way to address issues that are important to multiple people so that everyone hears the same message. An objective person such as a friend or a professional can be asked to facilitate such a meeting to ensure it adheres to its purpose.

  Something that causes tremendous upheaval in even close families is disagreement over the direction of care of a dying parent. Some relatives can accommodate mild differences but strongly opposing views and ideological differences can quickly derail good end-of-life care. The alternatives of involving a legal professional or seeking state guardianship are time-consuming and often impractical; in reality, when significant stakeholders can’t agree, medicine errs on the side of continuing to do more until there is consensus.

  One way to avoid this is by creating an advance care directive, sometimes referred to as a living will. Our recorded instructions and wishes would have our personal authority and the legal recognition to end most disagreements. People worry that an advance care directive may not be respected by professionals – and it’s prudent to ensure your directive is correctly written and witnessed – but I hasten to point out that the real issue is that the vast majority of people have never thought about their death and never documented their wishes. Professionals increasingly welcome insight into the patient’s wishes and make every attempt to honour them. So, if we have ever thought about the kind of medical fate we’d like to avoid, for instance prolonged intensive care unit admission, futile resuscitation attempts, artificial nutrition or other unacceptable interventions, we must take the next step of making them known.

  A less formal alternative to a living will is appointing a surrogate decision-maker to articulate our wishes when we are unable to do so. But this means letting them know clearly what we want. It’s not possible and also very onerous for someone to guess at our intimate thoughts about dying and make critical decisions on our behalf.

  Dying well involves looking after ourselves but also being mindful of our loved ones.

  I LOST MY GRANDMOTHER when I was young. My conversations with my nanima never made it beyond what delicious fare she could cook for me and when I would visit her again. When I last saw her, I didn’t fully understand what a last visit meant but I could feel the emotion in the air wrap itself around me.

  Now that I’m a parent and my mother is a grandparent, I can begin to calculate the heartache in the room. My nanima wordlessly pressed two small gold beads into my hands, which my mother later had made into earrings. More than thirty years later, they are somewhat bent but still shiny. I regard them with a fondness that I have for few other possessions and look forward to passing them on to my daughter. The earrings are a physical reminder of my history and a tribute to my grandmother, who would have been extremely proud of all her grandchildren, especially since she never finished school.

  Society doesn’t teach us how to grieve, and those who have yet to experience it think that grief is a linear process. But I have seen how the stages of grief can collapse into a jumble, how grief has no time line, and how important it is to have minimal expectations about how we’ll respond to grief when it inevitably arrives at our own door.

  But we can hope to read the situation with agility, respond to others with empathy and find the courage to let go, thereby giving us a chance to emerge as whole.

  In travelling through grief, the poet Rumi says it best: that we carry inside us the wonders we seek outside us.

  Friendship and grief

  If you have one true friend, you have more than your share.

  Thomas Fuller

  OVER THE PAST SIX years, Josie had become a familiar face in the waiting room. After many ups and downs, her health was now failing. After being diagnosed with brain metastases, I knew that she was close to calling it an end to treatment and my heart felt heavy as I greeted her.

  For the first time, she sat in a wheelchair, smiling but looking thin and tired. Josie was always grateful for something, even if it were the sun on a wintry morning or being seen in clinic without delay.

  I suddenly realised that all these years Josie had been accompanied by the same woman who would see her to my door but never come inside.

  ‘Who is that?’ I asked curiously that day.

  ‘Oh, that’s Rae, my best friend.’

  I’d heard many heartwarming stories of friendship but there was always room for more. While filling out a lengthy insurance form, I asked Josie to tell me about Rae.

  She told me they’d met on the first day of school for their respective firstborns. After the children had gone inside, the two tearful mothers decided to take a walk.

  They never looked back. Their children turned eighteen, twenty-one and then thirty and the two friends remained close.

  At this, I recalled my own experience of meeting new parents at my children’s primary school. Many of our conversations were short and the relationships felt transactional. We met over athletics and barbecues, but it took a leap of imagination to think that the adult friendships would outlast the time our children spent together. I marvelled to Josie that a friendship that started at the school gates and thrived decades later was a testament to their character. She beamed at the compliment.

  Josie had lost her husband a few years earlier and was left with two daughters who lived nearby and were increasingly responsible for managing Josie’s home affairs while Rae saw to the medical aspects. Hearing this, I encouraged Josie to bring Rae into the appointments with her.

  A good friend is priceless but never more so than during a time of need – I liked Rae from the description but as I got to know her found even more to be impressed by.

  As Josie’s memory faltered, she relied on Rae to remember her questions and relay her daughters’ concerns, but Rae had the rare knack of never making herself sound more important or more reliable than her friend. When Josie developed word-finding difficulties, Rae never interrupted or finished off her sentence, instead enabling her to continue. When Josie felt well, Rae prompted her to walk but when she looked tired, she insisted on using a wheelchair. On the day Josie finally decided that she no longer wanted to come back to clinic, Rae helped temper the finality of the decision by suggesting they spend more time at the beach, which cheered Josie. On that last visit, I wished Josie luck and told her I’d miss her. I also expressed my admiration for Rae, who replied simply, ‘She’d have done the same for me.’

  Rae stood by Josie in her final days and brought calm through her presence and ability to anticipate her needs. She also proved a pillar of support for her daughters, who grew in confidence as a result.

  Watching deep friendships work naturally is a privilege, but it’s more common for me to meet casual acquaintances and good friends who want to be helpful and don’t know how. They fear saying something inappropriate or doing something wrong at a sensitive time and hesitate to offer suggestions that may be misconstrued.

  Meanwhile, most patients wou
ld be grateful for help but hate to be a burden – we intrinsically value our dignity and independence.

  It was my good friend Joy who showed me how to help someone who is not a close friend or relative.

  When Joy’s colleague, Eve, was suddenly diagnosed with a catastrophic illness and her co-workers were wondering how to help, Joy offered to take Eve’s children home after school, take care of their dinner and supervise their homework before dropping them home. Inundated by appointments, Eve and her husband welcomed this relief and Joy became an anchor for their family. This arrangement lasted for several months until Eve became more unwell.

  After discussions with her family, Joy extended her help to having Eve’s children spend a few nights at her house during the most tumultuous phase of their life when their mother had to endure repeated hospital visits. I was sure that Joy’s house was an oasis for the children but I was nevertheless curious to know how her husband and children reacted.

  She told me that they’d agreed they had the resources and goodwill to help others and that, if the situation ever grew untenable, they’d review it. But given their resilience and generosity, it never did. Joy told me that they periodically asked about Eve but never probed the children, choosing to confine themselves to providing the normality they needed. I was struck by her emotional maturity.

  Eve’s condition continued to decline and within a year of diagnosis she was dying. I continued to learn from Joy’s response to the situation. She admitted that, being non-medical, she didn’t really understand the nuances of Eve’s illness but also didn’t need to know more than she was told. This proved prophetic because Eve was said to be bitter about her fate and unable to accept her deterioration. As a result, she had distanced herself from others, including her helpers.

  I couldn’t help admiring that, in spite of the fact that Joy received hardly any explicit recognition for her generosity, she took her role seriously, never judged, and focused on the children’s welfare. She also had a full-time job and didn’t overextend herself.

  It was a fine balancing act and she acquitted it marvellously. As she explained it, she was playing a modest role in a great tragedy and just wanted to do her best. All of society is enriched by people like her.

  At some point, we will all find our lives intermingled with those of our friends and acquaintances who are experiencing illness. Whereas some will count their blessings, many will lament the gradual erosion of friendship through unwanted advice, unwelcome intrusion and fixed ideas. Most people actually want to be a good friend to someone who is ill or dying but have never been taught how.

  Here are some suggestions that everyone appreciates.

  Be there in the ways they need

  Death can happen within days or weeks or be slow and inexorable. For the patient, this phase of life may be a time of internal reflection, colliding thoughts and involuntary worries. For friends, a rapid death can be shocking, while a slow death unearths many questions and internal conflicts.

  We may not know all the ways to comfort the dying or ourselves but simply being present is the most important act of kindness. The consolation of a hundred distracted text messages and group emails pales into insignificance before someone who shows up to say ‘I am sorry about your news, I am here.’

  We commonly worry about imposing on people we don’t know well but most of us die feeling lonely rather than crowded by well-wishers. Someone grappling with difficult physical and emotional concerns doesn’t lose the desire for human communion, but fulfilling this desire becomes difficult on one’s own. My sickest patients constantly worry about not being able to reciprocate friendship and kindness. Something they really appreciate is replacing the open-ended offer ‘Let me know if you need anything’ with a more committed ‘I’d like to see you but will stay only as long as you want.’

  I tried this recently with a friend who is terminally ill. I brought lunch and was confident of not overstaying my welcome. But I’d forgotten how easily she tired and was mortified when she had to tell me to go. Embarrassed by my lack of sensitivity, I chastised myself for assuming that she’d wanted me there at all. But she sent me an email that very evening saying how much she had enjoyed seeing me and asking if I’d come again. I saw that, despite her reduced energy, she was still invested in our friendship.

  Terminally ill patients are often bombarded by questions from professionals, caregivers and complete strangers. Good friends avoid this, instead finding ways of simply being present.

  When a widower was struggling to look after himself at home, I asked why he didn’t tell his many concerned neighbours how to help. He sighed that he had to find something that sounded important, although his greatest wish was for someone to warm his food and read the newspaper to him.

  Another very valuable support is a concrete offer to complete some household chores that don’t stop for anyone. No help is too menial and just being there fosters understanding.

  Be willing to listen

  A ninety-year-old patient once gave me some unforgettable advice. He said that all he wanted at the end of life was for someone to listen. He didn’t want his condition to be compared with others and didn’t need stories of survival. He didn’t need to hear he was courageous or that he would be fine. He wasn’t afraid to die but, while alive, all he yearned for was companionship that was quiet and undemanding and capable of handling the inevitable sadness of getting old and feeble. When faced with the question of how to help a dying friend, this is advice we can all use.

  Build a team

  Supporting someone at the end of life is hard, even for the trained. It’s not meant to be a solitary task, no matter how much determination and capability we bring to it. Wherever possible, we should enable others to join us in the journey.

  Being mindful of one’s own commitments isn’t selfish, rather it’s sensible, and we can care for each other more efficiently if we build a team with assigned tasks. However, it’s crucial to be considerate of the patient’s actual needs. For instance, many of my patients are plied with food at a time when their appetite is poor and their freezer crammed with uneaten meals. They feel ungrateful declining more meals but, if someone asked them, they’d love for their pet to be walked, their bed to be made, or to go on a drive.

  We should want the dying to trust that we are not out to change their whole lives and that no job is too small for us. Being a friend who aims to fulfil these needs is our chance to care meaningfully for the dying.

  Recognise it won’t always be easy

  The impending loss of a friend is heartbreaking but the act of caring for someone at the end of life is also one of the most fulfilling acts we are called upon to do in life. While we all aspire to a peaceful end, it’s common for everyone involved to suffer crises of confidence. Hope, despondency, relief and anxiety can all cycle together – good friends understand this and rise to the challenge. They know when to advocate and when to be silent. Friends must find ways of pacing themselves, acknowledge their own fears and frustrations, and locate their own supports.

  There is no need to downplay the challenge of our work or the emptiness the death of a friend will generate; we could embrace our role knowing that we are made stronger by caring for others and take heart in the consolations of a friendship we have honoured to the end.

  Deciding between work and rest

  Sometimes the most important thing in a whole day is the rest we take between two deep breaths.

  Etty Hillesum

  MANY PATIENTS DIAGNOSED with a serious illness face a dilemma. They aren’t entirely well, but their prognosis isn’t immediately poor, and statistics can’t predict how an individual patient will fare.

  Being sick is costly and stressful. Healthcare expenses build up, the mortgage still needs to be paid, the bills keep coming and the family still needs to eat. For many people it’s necessary to keep working, but beyond income, work serves another purpose. At a time when our identity is challenged on a number of fronts, work can be an anc
hor. Colleagues can become friends and willing supporters. A project and a deadline can be a welcome distraction from the anxieties of life. Talking to people battling their own problems can help us realise that we are not alone in our predicament.

  Upon receiving a diagnosis of advanced cancer, the first thing Yasmin did was to resign from her office job. Overwhelmed by events, she submitted her resignation on the way to her first chemotherapy appointment, saying she couldn’t think of ever wanting to return to work.

  I was sympathetic but wished she had waited a little or used her ample sick leave. As it turned out, she responded to treatment and her symptoms improved – and while she needed prolonged treatment, she wasn’t dying as soon as she had feared. This left Yasmin with a lot of free time. With a husband working full-time and her children grown, Yasmin began experiencing something she hadn’t imagined: boredom. This led to hours spent on internet chat groups, which fuelled severe anxiety.

  Yasmin was a medical receptionist who’d enjoyed her work. She reflected that contact with patients would have helped her maintain perspective as she experienced her own illness, and I agreed, but she’d been replaced, and it was next to impossible to find a new job in her situation.

  Her illness was classified as terminal because it was incurable but she was experiencing the next best alternative, long-term control. Thanks to modern medicine, there are many people like Yasmin with previously untreatable diseases who are living longer and better lives. They do live under a cloud of uncertainty and their life expectancy is shortened compared to a healthy population, but they’re grateful that their illness is not the immediate death sentence it used to be.