Death with Dignity: Time to start a dialogue

In a society where living with dignity is often seen as a privilege rather than a right, it might sound imprudent to even talk about dying with dignity. This, however, has become necessary to talk about given the technological, medical and public health advances in recent times and the advent of high-end medical care in hospitals, which is turning us into a "death denying culture". As Phillip Aries wrote in his 1977 book, The Hour of Our Death, "Death should simply become a discreet but dignified exit of a peaceful person from a helpful society….without pain or suffering and ultimately without fear". This is not necessarily the case for a lot of our terminally ill patients with life-limiting illness and irreversible medical conditions, as there is a very high prevalence of over-medicalising the "end-of-life care", including routine intubation/putting patients on so-called "life-support" and significant lack of clear communication between treating medical teams and patients' families regarding expectations/goals of care. This is not an isolated problem in Bangladesh, where some argue that aggressive, invasive medical interventions near the end-of-life is done by hospitals driven by financial gains, but is actually also prevalent in the western world where data has consistently shown a high rate of inappropriate, invasive medical procedures in the last 30-days of a person's life.

Modern medical care tends to focus on curing, and restoring, which may sometimes conflict with accepting death as a natural event. Like the population, physicians and other health professionals have diverse backgrounds and levels of experience with end-of-life care, and some may feel they have a duty to prolong life at all costs and/or see death as a medical failure. For others, they may not realise their patient is nearing or is at the end of life until very late. There may also be a perception amongst some health professionals that palliative care and end-of-life discussions are less relevant or more difficult to broach for patients with non-malignant diseases, such as dementia, frailty, neurodegenerative disorders, and progressive cardiac or respiratory failure. All of these, in turn, leads to the discrepancy between the actual clinical prognosis/life-expectancy of the patient and the patient/families' perceived understanding/expectations of the treatment outcome. That then feeds into the cycle of communication breakdown, unrealistic expectations, over investigations, unnecessary

invasive procedures and ultimately, a "bad death" which is over-medicalised with no sense of "closure" for the family and a resentment towards the treating medical team/hospital.

So how do we break this cycle? The first step towards solving any problem is actually acknowledging the fact that there is indeed a problem that exists. Talking about death is often considered a taboo and, if not done in a culturally and religiously sensitive manner, can create unwelcome distress and anxiety. In the context of a life-limiting illness (i.e. cancer), the bulk of the onus falls on the treating physician to have an open and honest discussion about the diagnosis, the best- and worst-case scenarios with or without treatment including treatment goal, intent & outcome, and most importantly prognosis. This discussion can then be followed through with understanding patients'/families' expectations and finding common ground, respecting patient's right of autonomy and formulating an "advanced care directive" and "end-of-life care" management plan.

So what is advanced care directive? Advanced care directive is the process of planning for a person's future health and personal care. This helps ensure that an individual's choices are respected for future medical treatment and their beliefs, values and preferences are made known. This could include guidance/directives regarding whether or not to institute invasive medical procedures in the face of inevitable death, withholding life-prolonging treatment when there is no irreversible cause of clinical decline, only instituting treatment to maintain comfort at the end of life and also appointing a surrogate decision maker when the patient no longer retains capacity to make decisions. As intimidating as it may sound, this complex discussion can save an enormous amount of time, energy and resources both for the patient/family and the medical teams, which can then be diverted to maintain a meaningful quality of life. Ideally, this discussion should always take place well in advance of an acute clinical decline, sometimes even months ahead, at the time of a life-limiting diagnosis, provided the clinician had the professional integrity and willingness to have this discussion. For advanced care directive to become part of mainstream patient-centred care, hospitals and medical fraternities must educate colleagues and patients about the purpose and mechanics of advanced care directive, mandate this for all eligible patients, document appropriately in accessible formats, and evaluate congruence between expressed patient wishes and actual care received.

To achieve a "good death", good quality end-of-life-care is of paramount importance. By definition, this is something that ensures a better quality of life for the patient before death, preserves the person's dignity, minimises physical and psychological burden of disease-related symptoms, addresses the patient's/families' cultural and spiritual needs and increases the engagement and satisfaction of the healthcare staff. Good end-of-life care enables patients nearing the end-of-life to live as well as possible, and then to die without unnecessary prolongation of the dying process. This, however, should never be confused with euthanasia, which is an "active process of ending someone's life" which is not compatible with the current ethical, legal and religious framework of our country. Knowing when to withhold or limit treatment that is inappropriate or potentially futile to the patient is a key component of good end-of-life care. This could include refraining from putting the patient on a ventilator in the context of progressive, metastatic cancer, not instituting cardiopulmonary resuscitation and withholding active, parenteral feeding & hydration. If explained well to families of a terminal patient, most will opt to spend time at their loved one's bedside in the final days of their illness rather them seeing him/her connected to a "life-support machine" with no realistic hope of recovering to a normal pre-morbid condition.

Modern medicine is as much of science as it is an art; it is about balancing hope and expectations. The complexities of human life can never be captured or simplified in an equation of health and disease, and there is nothing wrong is accepting death as a normal extension of our mere existence and not a "failure to preserve life". To even think, as physicians, we can cure illness and restore health, is arrogant and ignorant at the same time. We are not healers, we are merely helpers, to promote health and wellbeing, to maintain our patients dignity in life and more so in their death.

The writer is a medical oncologist based in Melbourne, Australia.