Hospice is concerned with life and living and that includes dying

We have little control over the fact that we are going to die, buts we can control how we live, writes Tony O’Brien

Anyone could face a diagnosis of a fatal illness, so to those close to us, if we say thank you, I'm sorry, and I love you, we have said it all.

HE word hospice is one that possesses a unique capacity to evoke powerful and often conflicting emotions. It is a word full of inherent contradictions and stark contrasts. Historically, hospice represented a place of death — a home for the ‘incurables’. Not surprisingly therefore, hospice continues to generate enormous fear, apprehension and aversion.

In Cork, senior citizens often describe the experience of being urged by their parents to cover their mouths with a handkerchief and to run as quickly as possible past the formidable gates and high walls of the old hospice at St Patrick’s Hospital on Wellington Rd. In later years, these same adults report instinctively blessing themselves as they drive past the hospice as a form of silent prayer invoking the Lord to protect them from ever needing such care. We are never very far from our past. We are never very far from our fears.

For those who experience hospice care, a different narrative emerges. Words such as care, comfort, love, and security are frequently used to describe the modern hospice experience.

Hospice is primarily concerned with life and living, not death and dying. It has at its core a singular resolve to enable and support each individual person to live the life they choose to live, in the manner and setting of their choice, for the duration of their natural life.

This is achieved by means of good pain and symptom control combined with a holistic focus on the needs of the individual. In hospice, we are not treating disease, we are treating the person. In medicine, it is far more important to know the person who has the disease, than the disease the person has.

Hospice is life-enriching, life- enabling, life-sustaining, life-prolonging, and life-affirming.

Hospice is concerned with life and living and that includes dying, for dying is an integral part of life. For the purposes of this article, the words living and dying are used interchangeably only because they are one and the same thing.

People die (and live) in hospice and people die (and live) outside of hospice. We have little control over the fact that we are going to die, but we can control how we live, and we can live until we die. Death comes to 100% of the population — how more ‘normal’ can any phenomenon be?

The commonly held misconception that all death is avoidable or at least may be postponed indefinitely has clearly no basis in fact. Take a look at the penultimate page of this newspaper and you will see what I mean.

Medicine has much to offer and has made enormous strides. Yet, if modern medicine cannot always add days to our lives, it can at least add life to our days. That is the story of hospice.

A diagnosis of a life-limiting or life-threatening disease is a devastating experience for patient and family. It is always a shock and a most unwelcome and obscene violation of our sense of integrity and wholeness. Nature is a cruel mistress.

Intellectually, we know for certain that nothing in life stays the same, yet emotionally, we are somehow programmed to believe that it will. And when serious illness strikes, it always arises in the unique context of an individual’s life — past, present, and anticipated future.

We all have three lives — past, present, and future — and as we approach the end of our life, all three aspects come into sharp focus, each demanding attention and scarce energy.

We are acutely aware of all the events from our past that are sources of pride and perhaps more acutely aware of those that are sources of regret, hurt and pain. At the same time, we are balancing all of the stresses and joys of today. And finally, there is the future that we had so confidently planned and that now is evaporating before our eyes. It is not easy to live three lives at once.

And yet, people do find the resolve to address the many issues that require attention. And when practical matters such as wills, banking, insurances, and property are addressed, people typically wish to focus their energies on the important issues of life — relationships. For many, their relationship with family members, friends, and their God becomes the sole focus of attention.

Equally, many use the opportunity to reassess their relationship with themselves and may regret paying too much attention to that critical voice in their own head that always seemed to find fault and was quick to highlight weaknesses and deficiencies.

Maybe, this is a good time to accept ourselves for who we are, and to unashamedly love ourselves for the first time in an unconditional and non-judgmental way.

To those close to us, if we say thank you, I’m sorry and I love you, we have said it all.

Much is written in recent years about the concept of a bucket list — things that we might like to do if we know that our life expectancy is severely curtailed. People who engage in this fantasy from a position of good health often speak about such activities as sky-diving, trekking in Nepal, cycling across the Golden Gate Bridge in San Francisco, visiting the Taj Mahal, or taking a boat trip across Sydney Harbour.

All are very laudable and worthwhile pursuits. In the hospice population, the responses are radically different if no less laudable and worthwhile. People tell me they would give away all they possess if they could sit at their own kitchen table and enjoy tea and toast with close family and friends, sleep for one more night in their own bed, or have a take-away meal with the grand-children.

Looking at a future life in which they will play no part, people often ask if they can bring a planned event forward. Hence, Christmas dinner is served in October, birthdays and anniversaries are celebrated months before the calendar date and wedding photographs are taken weeks or months before the wedding. And, why not?

Hospice is the great enabler. Hospice doesn’t make it happen but creates the space where people can make their own miracles happen, and they do. The capacity of the human spirit to triumph in the face of over-whelming adversity is a joy to behold.

Nobody wants to receive a diagnosis of a life-threatening disease. We can’t always control what happens to us but we can always control how we react. In the words of Victor Frankl, “between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.”

Hospice simply tries to create and hold that space, with love.

Tony O’Brien is consultant physician in Palliative Medicine, Marymount University Hospital & Hospice/Cork University Hospital and clinical professor of Palliative Medicine, University College Cork

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