There remains a degree of uncertainty over who the following words are attributable to, although being long gone I am sure that none of the ancestors of Benjamin Franklin, in a letter written in 1789 about the American Constitution, or Christopher Bullock, in his novel The Cobler of Preston (1716) or indeed Edward Ward, in The Dancing Devils (1724) will care that much: “Nothing is certain except for death and taxes”. The latter can be experienced, and the impact readily felt. Yet the former? Surely not? Since natural death, outside of those events that engage with prolonged or painful accidents, is simply a case of going to bed one night when you are incredibly old and not waking up in the morning.
That was my long-held vision of the one thing that all human beings will ultimately face, and nothing wrecked that illusion until I was into my fifties. Up until that moment in my life I had experienced the death of elder relatives, including my Dad, yet their deaths had been commensurate to this ideal. Even though I had been ripped apart by the death of my Dad and best friend, once the raw emotion had subsided I comforted myself with the notion that he was old, had enjoyed a good innings and that was ultimately the cycle of life. To edify this, I vividly recall when leaving Frimley Park Hospital, Surrey, after saying goodbye for the last time, I walked directly past the entrance to the maternity wing. Even the numerous sudden deaths that I had attended as a police officer did little to alter my rose-coloured view. Then my wife Theresa died aged fifty after a courageous battle against cancer, having undergone three intrusive brain operations and two strokes which included, along the way, a moment I will never forget, when a nurse called me to one side and enquired if I had arranged her funeral. She was still alive albeit paralysed in an unresponsive coma and one of my great death deceptions was destroyed in one extraordinary moment. Arranging a funeral didn’t necessarily follow death. This whole experience forced me to engage with a hitherto unwelcome narrative and although it engulfed our small family within its dark, cold grip I started to talk about the taboo that is death. Challenging not only my now shattered reasoning, but questioning why the hell do we ask the really important questions when, often, it is too late? Speaking to my Mum only recently I acknowledged that Theresa and I should have discussed our mortality in more detail, over and above that is the writing of a will. She responded by saying that we were too young but unfortunately her protective clarification was flawed since the grim reaper can take without notice.
Photo by Eyasu Etsub on Unsplash
My childhood inquisitiveness has slowly got the better of me and I now feel confident to talk about death and the circumstances that many may face. Our own demise may be ordained in a way that gives us notice, leading me to the questions, how would I deal with death if I knew I only had a set period of time to live? How would I tell my children? Without faith how could I process this gigantic monolith?
I decided that I needed a little help from my friends to frame this investigation and called initially upon my Facebook chums to map the path before I took a huge leap and spoke directly to an experienced professional who works in a Hospice. I figured that I may better grasp the realities of certain death by questioning a special human being who has dedicated her life to managing the end of life care for people who know their own demise is not beyond the horizon.
Overwhelmingly my cohort of, hitherto, coffin dodgers didn’t fear death itself but rather the process of dying. Summed up elegantly by the questions, how will it happen? When? Will I know about it? How old will I be? What impact will it have on my children? This starkness was countered by a healthy vision that there was still an assumption of a few decades of life beforehand, perhaps signalling an inherent need not to dwell on the end. A lengthy period of dying which was painful or the onset of dementia was terrifying to some. A counterbalance to the obvious despair was the recognition by one learned friend, pointing out the significance of culture and that some may be more able to prepare for the predictability of death. For example, in Sweden a contemporary ‘dostadning’, a hybrid of the words for death and cleaning, is the process of decluttering the house before you die. Euthanasia was also a topic of reflection with the cruelness that exists, often underwritten by law, allowing only the wealthy a dignified end. Death as a celebration of life was amplified by one beautiful philosophical statement: “Whilst in Thailand after the Tsunami, I was very taken by the Thai attitude to death, almost a celebration of the life of the deceased.”
I have always struggled with the concept of faith ever since I was old enough to appreciate that around the world people appeared to die for all manner of unnecessary reasons, and I could never get my head around the death of a child. What divine entity could ever make a convincing argument for that? Indeed, this position was succinctly anchored when a friend said, “if there was a God he’d have not taken my mum when I was seven and my dad at forty.”
Yet one bright summer’s day whilst sitting in the Bluebell Wood, where the ashes of my wife and Dad had been scattered, alone in my own thoughts I finally accepted that life after death does exist. I knew that Theresa’s DNA was part of our children Lucy and Adam. Knowing too that one day my ‘O’ level pass in Chemistry (an impressive grade B!) would prove useful, I realised that her atoms could never be destroyed, but rather redistributed. Perhaps into a blade of grass, latterly to form nourishment for another living creature and thus to maintain that ever revolving wheel of life. Nonetheless I did wonder, if I were to be notified of my impending demise would a lack of faith hinder the process? Would a sudden epiphany save me from the bowels of hell? As I, surprisingly, sought to make sense out of this conundrum the atheist in the group came to the rescue and poured scorn on any such notion!
Photo by Guy Basabose on Unsplash
Well over half of my merry doomsters put clear water between themselves and any pretence of religion. Death was final with no afterlife. This narrative led some to express anger, one having lost a friend to cancer and a loving Dad with both deaths being projected as unfair, unjust, and ugly. Losing their partner and best friend was the most haunting of all potential future outcomes. Raised a Christian, another admitted that for them Church was for, “hatches, matches and dispatches” yet stopped short at proclaiming the existence of heaven. One openly admitted that they were hedging their bets and qualified this seemingly comic perspective by admitting that a lonely death petrified them. One wondered who would turn up at their funeral. An admission by one, who exclaimed, “I have a weird mixed up faith!” typified this uncertainty by acknowledging what religion had done for her in the living world yet disclosing the trigger point of her Dad’s dismissal of his religious beliefs when a colliery spoil tip engulfed Pantglas Junior School, Aberfan, South Wales on 21st October 1966, killing one hundred and sixteen children and twenty eight adults.
Faced with an end of life scenario that allowed for a period of spiritual contemplation one subject, possessing less than convincing religious values, nonetheless admitted, “Never say never, but it would feel a little disingenuous to take up something I had shunned to suit my current convenience.” More damning was the statement, “Nah. Build your resilience in life. Believe in Karma, try to be good and do good and don’t do that last-minute panic thing because it will be too late then!” One was a little more liberal in their outlook in terms of a last-minute religious switch, “I’m not sure. Maybe that’ll change as I get closer to the end if I’m aware.” Given the prospect of time to prepare and as a link to the next stage of my enquiry I was struck by the prophecy of this confession: “Thinking about my own death, it’s more about the practical arrangements. Most importantly, what music am I going to have at my funeral? My current favourite for people to leave to is Every Breath you Take by The Police. That amuses me! I don’t want a big drama at the end. Just people enjoying a few G&Ts! I might take my glass with me!”
So, with my questions formulated, like some old school news reporter, I took a few deep breaths and entered the world of the Hospice and end of life care to establish if I could better understand how death is faced by those who are acutely aware of an aspect of life that I would seek to delay for as long as possible.
What happens in a Hospice?
It’s a place that provides palliative care for people in the terminal phase of their illness, typically in the last two-weeks of their lives. Specialist nurses care for both residential patients and those that visit to manage symptoms that will often connect with pain, nausea, breathlessness, and agitation with a broad range of complex drugs.
People often mistakenly think that a Hospice is a doom and gloom environment, but in reality the remarkable spirit of those that choose to work there make it a truly uplifting and special place. Sometimes I don’t really know how the staff do it, and I’ve never worked anywhere like it in thirty years of nursing. It’s a calling, not a job for everyone. The passion is tangible. Where I live the view of the older generation, as typified by my own parents, tends to reinforce the negative stereotypes, yet Hospice staff now visit schools and discuss death and dying in order to break this myth.
Many of our staff are volunteers driven by incredible humanity, some of whom have experienced the death of a loved one themselves. The tasks they fulfil, for example, receptionist duties, washing-up, talking to patients and bringing in pets are vital and maintain the pulsing positivity.
What does your professional role entail?
I am responsible for ensuring that the precise admissions criteria are met through regular dialogue with other medical partners. A daily bed meeting with a Doctor and members of the triage team ensures that we can effectively manage two to three new admissions per day.
Discussing what is important to each patient is perhaps the most fundamental question. Children, pets, and their home feature prominently although we must be prepared for diverse revelations that can often occur during these open, empathetic, and often challenging discussions. As a patient’s health will ultimately worsen the final scene is also discussed with around seventy percent wishing to return home.
We also provide a 24/7 support line for patients, relatives, friends, and other healthcare professionals ensuring that the requisite palliative care be delivered. Recently I spoke to a patient at home, a young lady, who explained that her husband was struggling to help her up the stairs to the bathroom and that she was now sleeping in the lounge on a sofa bed. It was clear that her breathing had become more laboured and this was now a crisis situation. I immediately contacted the community health team and was able to implement an emergency intervention.
How long is life expectancy?
Palliative care is usually triggered by a referral when the patient’s Doctor is asked to reflect upon the question; could you see this patient being alive in twelve months’ time? I would always expect an estimated prognosis in terms of life expectancy, be it months, weeks, or days.
A patient’s journey will span specific cycles commencing with an outwardly well looking, independent and mobile individual. Two-months later there will be noticeable weight loss, weaker posture, and obvious signs of ill-health. A couple of months later the real deterioration is visible. It is important that inexperienced health professionals witness this curve since it can be stark.
Is there an age range?
There are Hospices for both children and adults. The former up to the age sixteen whilst the other is from eighteen onwards. Professionally I am uncomfortable with the interim two-year transition period although practically speaking any special circumstances will always be addressed. There is no upper age limit.
How do people prepare for their own death?
There are several ways; some people are in total denial, whilst others are accepting, often in a blunt and matter of fact way, although sometimes this indifferent attitude can mask a real fear. The incredibly moving story of the death of Caron Keating (41 years), the television presenter, and daughter of celebrity Gloria Hunniford chronicled her rejection, engaging in fruitless journeys around the world to seek a cure and typified the most resistant of reactions as did a personal experience of a young lady who mistakenly believed that caffeine enemas would repel her impending demise, and would frequently self-administer. This was made all the more harrowing since her family felt compelled to support this irrational practise up until a few days before she died.
Of the patients that are accepting some feel comfortable to speak openly about the journey that awaits yet cannot bring themselves to discuss this with their partners and other members of their family. For some this is, so they believe, the final mark of strength yet many have simply not cried for so long that the notion of breaking down in front of loved ones is inconceivable.
Advance care planning or more simply put talking about the needs of a patient are critical. However uncomfortable this may appear assumptions on all manner of things, from funeral arrangements to the framing of a will can never be remedied in the future.
Are there any differences in how either sex deal with their ultimate demise?
This is a hard one. I don’t really know if there is a difference. From my experience men often believe that they should go first because they think that’s the order of life. It is awful to see an elderly couple with no other family members present, with one partner holding the others hand as they slip away, then having to leave the room on their own. That is truly heart-breaking.
I have no faith. Am I in trouble?
This question made me laugh! In short, No! It is all about choices.
From personal experience people with faith or religion in their lives appear to die more peacefully. It’s almost as though they know that they are going to a better place and are more accepting rather than fighting it. A positive mental attitude will always help. I think you are OK!
What practical advice would you give families faced with this predicament?
Honesty is always the best policy. Patients always know that they are dying or are about die. When anyone says, for example, please don’t tell my Mum or Dad about the Hospice, I cannot do that. Years ago, everything was brushed under the carpet. Nowadays clinical research has shown that these understandably challenging conversations need to happen. It is more than simply writing a will and power of attorney (especially important if the loved one cannot communicate) so that the everyday domestic issues can be better managed.
I am always compassionate but firm with families. Our staff would never hide anything although we would always engage in a supportive and skilled manner. A clear explanation of the support plan and how other health professionals are connected is imperative. Practical advice too, for example, towards the end of the life of a loved one when feeding them or even offering a drink may do more harm than good. And at the very end there is no need to call for paramedics, just the nursing team who can be present, often within the comforting environment of home.
I do get amazing positivity and thanks from families, even from the initially more challenging ones.
How can we better prepare surviving partners?
In giving professional, caring and sensitive support before, at the time of and after death. At the Hospice we follow up on bereavement a day or so afterwards to ensure that the surviving partner knows we are there for them and remind them that other support is available, such as counselling. They can visit the Hospice chapel and are always invited to remembrance events, especially at Christmas.
After six weeks we follow up with the families to offer bereavement support. Grief is ongoing. It never ends.
How can we better prepare children?
Some families have very young children and there are several ways in which they can be supported. For example, creating lovely memory boxes which are designed to encourage discussion about what is happening to their Mum or Dad. There are some brilliant books too and we have a bereavement support programme for children up to eighteen years of age. With consent we can also help teachers who have a bereaved child in their class.
How do you deal with the grief?
It is so difficult to watch a family sobbing around a bedside. Totally heart wrenching. To see someone, often your own age, dying sometimes with young children, who could be your own, is just so horrendous. How could that not touch a nerve?
For some reason I can cope with the majority although there are always ones where something just connects, literally ripping you apart. Be it something that was said, a similarity to my own life circumstances or a moment in time that captures an essence of humanity. This is especially so if I am dealing with something crucial in my own life. These times can resonate so clearly, deep within your soul.
We do a lot of group talking afterwards too. As nursing professionals, we do have a great sense of fun and camaraderie and socialising with each other and being there for one another is especially important.
Do you fear death?
Yes, I do! There aren’t many days that pass without me reflecting upon my own mortality. Not surprising since I am dealing with this on a daily basis. You can’t not think about it. However, it doesn’t spoil my day as I am lucky to work within the most supportive workplace ever.
I would hate to be on my own at the end. This terrifies me. We always make a conscious effort to sit with a patient who have limited or no family support at all. There are things I need to document so everyone is aware of what I want.
I am indebted to my remarkable professional witness, who for confidentially reasons must remain anonymous, and for those that contributed so enthusiastically to this piece. Returning to the title, death is defining yet it doesn’t necessarily herald a period of eternal heartache. Grief can never be eradicated yet with support, reflection, and reverence and a heap of talking all of us can better manage this process which is inevitable yet often occupies a place that is out of bounds. It isn’t. It is, ironically, an important part of life.
As I raise my glass of Gin & Tonic to you and yours and wish you a long and prosperous life I also leave you with the reminder that the tough things in life deserve to be discussed. After all, it’s good to talk. Cheers!
© Ian Kirke 2020 and all photos not otherwise credited.