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When the dying ask for dignity

When it's time to 'pass on', addressing physical suffering alone cannot ease anxieties. After all, how does one prepare for the end? Find out why palliative and hospice care — holistic services that ensure quality of life for the critically or terminally ill — are the need of the hour in the UAE

There are many things I'll never forget about the last time I saw my maternal granddad. Removing our footwear outside the ICU. The unforgiving sterility of the ward. How it cloaked all who entered with the kind of teeth-tingling foreboding that only stainless steel can. The slow beep-beep-beep of machines tracking his vitals. And tubes. So many tubes.

But the thing I remember perhaps most vividly is his face. Haggard and drawn, his breathing terribly laboured, it was a mask of fear. It shocked me to see such an alien emotion etched across those frail features, for he'd always been a man of great fortitude and faith. But as his eyes moved slowly, uncertainly, from face to face, I realised the fear may not have been so much of death as it may have been of dying. He didn't know what was happening. He didn't recognise any of us around his bed. Alzheimer's, crueller now than ever, had robbed him of the only faculty that might have brought him some comfort at this critical, final stage: his memory.

I wish, to this day, he hadn't been so scared. I wish there were - as Deborah Landau, poet and author of The Uses of the Body put it - "midwives to help us navigate our deaths, as there are to help us navigate birth". Well, I didn't know it back then in 2014, but such unsung heroes do exist. Better known as palliative and hospice carers, they work to improve the quality of life for those facing life-threatening illnesses, helping such patients have as dignified and peaceful a passing as possible when the time came. Unfortunately, they're also a practically unheard of entity in many parts of the developing world - and yet to find widespread acceptance in more developed counterparts.

The modern hospice movement is fairly recent - the world's first purpose-built hospice, St Christopher's in South London, was founded in 1967 by Dame Cicely Saunders, widely credited with laying the foundation for its philosophy - yet its efficacy in improving the lives of the seriously or terminally ill is well-documented. According to World Health Organisation (WHO) estimates, about 40 million people are in need of palliative care every year - but only 14 per cent currently receive it.

THE EXPERTS WEIGH IN: (left to right) Teresa Quinn, Director of Clinical Operations - Home and Community Care at Amana Healthcare; Dr Mona Tareen, palliative care hospitalist at American Hospital Dubai; Dr Dilshaad Ali, CEO of Avivo Group

What's the hold-up?

In the UAE, too, the drive is on to meet the WHO's global targets of palliative care by 2020 - but industry experts admit there is a long way to go, with several legal, cultural and religious barriers to overcome first. Currently, the number of effective providers of such services in the country is extremely limited, with Al Tawam Hospital in Al Ain seemingly the most well-known. [The hospital did not respond to a request for comment.]

There is unanimous agreement, however, that one of the first steps towards achieving progress in this area is to address misconceptions deeply entrenched in cultural beliefs - and perhaps even ignorance - about what end-of-life care is all about. For one, it's not only about physical pain management, says Teresa Quinn, Director of Clinical Operations - Home and Community Care at Amana Healthcare, a specialised Abu Dhabi-based provider of long-term acute care. "The treating of symptoms and administering of medicine is just one part of it; good palliative care constitutes a multidisciplinary approach that deals with the needs of the whole person - emotional, psychological, even spiritual - as well as their family."

There is a fine line between palliative and hospice care, in that the former is comfort care offered to anyone with a serious, debilitating illness (from dementia to paralysis to cancer). When treatment is no longer effective, that's when a patient opts for hospice care, which is geared towards ensuring the 'quality' of life, as opposed to the 'extent' of it. And quality usually means different things to different people.

Teresa tells of a former patient - a 43-year-old mum-of-two - who'd been referred to them after being told she had about a month left to live. "All she wanted to do was be at home, to spend the remaining time with her kids. She needed a lot of care and assistance, and was in an awful lot of pain, so our nursing team would do 12-hour shifts with her. She had a deep wish to redecorate her son's bedroom, so we had an occupational therapist work with her, accompanying her to furniture stores, helping her pick out paint and furnishings. We also assisted her in making memory boxes for her children, which she filled with hand-written notes, little gifts, and pictures of them together, so that the kids could receive them when they were older when their dad thought the time was right. A social worker talked her through her fears, and even worked with her husband and sister to prepare them for the inevitable. She hated being in hospital, so we'd liaise with her hospital team (taking her blood samples to them, for example), which meant that she only went in when she absolutely needed to." Eventually, her condition did deteriorate to the extent where she needed to be hospitalised, and where she eventually passed away, but Teresa is thankful that they were able to ensure the young mum got to spend that much-desired quality time with her family.

This kind of across-the-continuum support or coordination of care is what patients need when they're nearing the end of their days, but which is usually lacking in general or acute hospital setups around the world. "The acute hospital setting is not the ideal space for someone to die," points out Teresa. "Families are limited by visiting hours, the staff on duty will usually have to divide their attention between multiple patients, the availability of specialised staff isn't guaranteed." If anything, it is the importance of this last that she cannot emphasise enough, as regular registered nurses are just not equipped to handle the complex struggles that go beyond physical care and that patients endure at this juncture.

This is partly because palliative care has yet to be built into formal medical training programmes - a problem not specific to the UAE alone, but one that, till addressed, will continue to produce professionals ill-equipped to help patients and families through death and bereavement.

There is, at the very least, a certain competency required to break bad news. Without it, you could well end up with irritable doctors coldly telling distressed 80-year-old women their husbands "got sick and died" before sweeping away so quickly it was as though they'd Disapparated* into thin air - as was the case for my grandmother, who, by the time she found her voice, also found herself alone with myself and a timid nurse who attempted to shrink into the wall instead of answer any questions. [*A Harry Potter reference, Disapparation refers to a wizard's ability to disappear in a trice by simply turning on his heel.]

"Families will always have a lot of questions about the moments just before their loved one(s) passed away," explains Teresa. "They need to be able to come back and speak to whoever was present at the time, someone who'll understand what they've been through and give them the support and counselling they need in the days immediately after."

PIONEER: (left to right) Dr Rajagopal during a home visit; receiving the Padma Shri award this year

A question of ethics

In a peer-reviewed article published last year in the Journal of Palliative Care & Medicine, Nesreen Al-Alfi of Fatima College for Health Care Sciences in Abu Dhabi highlights yet another cultural norm that acts as a hindrance to better end-of-life care: the insistence of family members to keep bad news from a patient. Many family members still approach oncologists with requests to hide the actual status of the diagnosis, believing that such news could devastate the patient and deprive them of the morale required to fight the disease, she notes. But such decisions also mean the carers cannot have genuine conversations with the patient, regarding the latter's own wishes or plans regarding quality of life.

"The first overriding principle of medical ethics is autonomy," notes renowned palliative physician and chairman of Pallium India Dr MR Rajagopal, speaking to WKND via telephone from his base in Kerala. "If you want to be told of a serious illness you have, that is your fundamental human right and I, as your doctor, have a duty to tell you. Likewise, if you don't wish to know, it is my duty to respect that." However, he adds, that is the black-and-white ethical answer; there is much more to consider when it comes to families trying to withhold information from patients.

While truth should not be "thrust on the unwilling", it is important to understand that when seriously ill patients are left in the dark, they are also vulnerable to unbridled anxiety and the unmatchable suffering that comes with loneliness, considering their family is avoiding their questions and not being honest with them. "False reassurances destroy trust and cannot be sustained. Of course, you will be sad if you are told the truth: you'll lose sleep, be angry, snap at family. But, with loving relatives helping you, you get used to the reality - and can look at what's next. I believe truth, given in the right dose at the right time, with compassion, is a good form of treatment."

Dubbed the father of the palliative care movement in India, and a recipient of the Padma Shri award this year for his contributions to the field, Dr Rajagopal has been boldly challenging the healthcare industry's ethics for over 30 years, calling his peers out for "choosing to concentrate on the disease, while ignoring the suffering" of the patients in their care. When he started out as an anaesthetist, he thought he "had the means to take away much of the pain". He quickly realised merely offering nerve block procedures could not alleviate the fear, anxiety, isolation and even suicidal tendencies that patients experience due to their physical afflictions - and went on to co-found the Pain and Palliative Care Society in 1993, now recognised as a model demonstration project by the WHO.

"Healthcare today is not really healthcare - it has evolved into an industry seeking profit," states Dr Rajagopal, whose life story was turned into a documentary film, Hippocratic, last year. "I'm not saying everyone is motivated by profit, but an industry practising without an ethical framework can contribute to the suffering. Dead people do not have an association; if they did, they'd revolt against the needless suffering they'd been put through."

You don't need hi-tech gadgetry to remedy this situation, he adds. "Once pain and other symptoms have been relieved, there are only two things that will matter to me as a critically-ill patient: the love I give and the love I receive. I need a hand to hold when I'm afraid, to be with someone who loves me, to have my grandchildren kiss me. I cannot, therefore, find any justification in a medical system that denies people the only things that are important to them in such a situation."

At 70 years old, he is "by no means complacent", despite his achievements in driving the movement in his country and being in the running for Nobel Peace Prize this year (a nomination he neither confirms nor denies, in keeping with prize rules). If you too live in a country where palliative care access is either non-existent or limited, Dr Rajagopal says there is only one way to change the system: encourage more dialogue on the subject. "Palliative care is a mandatory component of healthcare, but I believe it will only come into practice when there is greater public demand for it."

Approved by law

While the challenges are manifold, the legal red tape that came with the UAE not having an official DNR (do not resuscitate) or AND (allow natural death) code for the longest time meant that every health care service provider was obligated to perform CPR on dying patients, regardless of whether they wished to be revived or not. Failure to comply would have made medical practitioners liable to prosecution. In a positive step forward, however, 2016 saw sweeping amendments made to those laws, with the new policy putting in place a framework that would permit medical personnel to allow natural death to occur - provided the patient suffered from an incurable disease, all methods of treatment had been exhausted, and at least three physicians had advised against resuscitation.

It was a move that made caregivers across the country breathe a collective sigh of relief. "I'd say it was a bit of a release to have such a law come into effect because it meant that, for us, as physicians, we would be able to provide compassionate care and also give terminal patients a choice," says Dr Mona Tareen, palliative care hospitalist at American Hospital Dubai, who has, in the past, had patients ask to not be sent to the ICU or made to undergo futile procedures that would not add to their quality of life.

But there are other legal entanglements challenging hospice care development, rooted in unrealistic fears of the use of opioids in pain relief. The prevailing notion is that opioids are drugs or agents guaranteed to cause addiction - hence, people are reluctant to want anything to do with them, even if they could provide patients respite from intense suffering. "This is a misconception stemming from those who haven't been trained or who don't understand how opioids work," explains Dr Mona, who notes that a range of alternatives will be considered before a physician prescribes opioids. "If you have the right clinical expertise, you'll rarely run into the side-effects or addiction people worry about. The idea is to manage pain, keep the patient comfortable, and achieve quality of life." If the current opioid epidemic in the US is a concern, experts note it has come about, in part, due to the physicians' lack of training. The UAE's extreme caution and heavy regulation of opioids suggest little chance of such a situation arising here.

Dr Dilshaad Ali, CEO of Avivo Group that offers home healthcare services in the UAE, offers one more perspective: the social structure. "When you consider specialised providers available in other parts of the world who are successfully offering these services - Australia and Canada are great examples - a big part of it is because of their social system as well. Long-term care is not something insurance providers usually cover - and that can lead to patients and families struggling with the costs of hospice care. We need to strongly consider developing a social structure, where people who need hospice or palliative services are able to access funds so that they can be cared for towards the end of their days."

Coming to terms with being terminally ill

One of the biggest elements of end-of-life care is dealing with the inevitable questions that patients have about life after death. Teresa Quinn, who has extensive experience as a palliative and hospice carer, reflects on trying to make the transition just a little bit easier for her patients over the years. How do people usually deal with coming face to face with the end?

Knowing death is near takes a huge emotional toll on patients and their families, who can be faced with disbelief, fear (of the unknown, of being in pain, of dying alone), anger at their situation, and guilt (at being a burden, or perhaps leaving children behind). Many search for their life's meaning, and seek support in spiritual beliefs. My own experience is that those who have faith in some kind of afterlife tend to deal with the prospect of dying far better than those who don't. Having faith that they're going on to something better helps them cling to that and be at peace.

In the active fears of dying, individuals can really struggle with symptoms - pain being the most common one, the result of both physical and emotional distress. In those circumstances, I always encourage the family to speak to the patient, even when unconscious, because they can still hear you. This can be very calming for patients, so I encourage them to really hone in on positive assurances. Again, something that's very important for healthcare professionals: to be strong enough to talk this through with family members.

Do you find they have many regrets?

A lot of people experience regret - for what they may or may not have done - and can really struggle with those feelings. Many always deeply desire forgiveness and reconciliation towards the end (perhaps they've fallen out with a family member or friend). I have repeatedly seen how the dying can wait and linger - at times, for days - for that estranged family member to see them and, within five minutes of that person entering the room, pass away.

What have your experiences with such patients taught you about human nature - and life itself?

One thing they've taught me is that death is not discriminatory: not to age or race or anything. It can be imminent for anyone at any time, and it's a constant reminder to be very appreciative of the life we've been given. and to live each day to the fullest.