Living and dying – do we have choices?
Death and dying rarely appear as subjects openly discussed in the public domain. After all, who wants to know? Not many. In the survey on death and dying conducted in England and broadcasted by BBC 4 Radio News in March 2007, only 5% of the interviewees said that they were able to openly discuss issues surrounding the impending death with the family member as well as make decisions as to all funeral arrangements etc. 95% of the interviewed families pretended that nothing was happening. At death, however they had not the faintest idea of what would be the preferred choice of site or style of the funeral celebration of the deceased family member. In retrospect, they wished they had more courage to be much more open about it.
Death ranks as one of the taboo subjects of the twentieth and twenty first century just like sex in Victorian times. We conceal the stark physical reality of death, from dressing up the corpse and denying grief to the sophisticated method of cremation. Dying itself has become unpopular. After all, life has so much to offer, there are so many opportunities for enjoyment that death seems like an obtrusive interruption to our otherwise flawless passage of time. The dying individual is expected to pretend that he is unaware of his true condition. He is often steered and encouraged to participate in a ritual of mutual pretence. There is a covert expectation that death should occur without any ‘fuss’ and with the least inconvenience to the rest of people involved. This is particularly true in the clinical, impersonal environments of hospitals, where the vast majority of all deaths take place. Here the dying person is typically brutalized by the bureaucracy, rules and regulations of the heartless system. Death, an event of momentous personal significance, is played down and often ‘regulated’ through medication in order to maximise efficiency.
The conspiracy of silence about death in western society today is wide spread and causes a great deal of unnecessary suffering. It is a direct result of our shared fear of death So, the question remains: Why would one want to know more about death? Is it something worth our time and effort to think about or is it better to leave it alone and let it take its ‘natural’ course? My personal answer is ‘yes, yes, yes’ to the former and 'no, no, no' to the latter question, being the direct result of my recent first hand experiences that have let me glimpse into the reality of the final dimension of life. They also brought me face-to-face with my own habitual fear of death. But the answer to those questions remains as simple as ever, 'Yes' . Why? Because we are all going to face the final moments of our life. Sooner or later. It is inevitable. Dying is part of life and the more we know about it and better we are prepared for it, the more choice and control we have over the process itself.
In the last two years I had the privilege of assisting three close relatives in the final weeks of their life and was present at two deaths. Two very different scenarios, two very different circumstances. One was the death of my elderly mother in Poland in 2006 and one of T., an 88 year old auntie in Switzerland in June 2008. T. made her own choice to opt for euthanasia, my mother died as a result of a terminal disease.
Dying in Poland
My mother had two different terminal conditions, pulmonary fibrosis and stomach lymphoma. The doctors announced the first diagnosis with a dose of lightness and understatement. Four months later, when she started feeling pretty unwell, the consultant spelled it out in a much more down to earth manner: No, we are very sorry, there isn't any known cure for it, and it will eventually lead to death. We are very surprised that it is progressing so quickly…. When? It’s difficult to tell, every patient is different, but two years of life is the maximum that can be expected. My immediate instinct was to ask further questions pertaining death and the process of dying, but it quickly became very obvious, that the doctor never had to tackle these concerns before. And she didn’t this time either. The standard reply that each case is individual was considered enough. End of story.
Two months later, while in hospital being treated for pneumonia, my mum found a big hard lump in her stomach. The biopsy confirmed the dreaded diagnosis – yes, it was the case of a particularly malignant lymphoma of the stomach. The lymphoma specialist turned out to be just as inexperienced in the field of combined terminal conditions and dying as we were and I suddenly had a sober realisation that we were on our own. Medical professionals had no interest or capacity to talk about death and dying. They were very sympathetic and eager to offer treatments to prolong life. But nobody mentioned that this life would only prolong pain and suffering. Death doesn't seem to be a desired outcome in any situation, even in the face of intense suffering, and not a subject open for discussion. End of story. I started to look for the alternative sources of knowledge. Church was the next obvious place to turn to in search of hope, comfort, support and information. I quickly discovered how naïve I was in my presumption. The local parish priest turned up at an appointed time, read all the prayers prescribed for this occasion… and left, without saying anything else to my mother or to me. It was the quickest home visit I have ever witnessed, and devoid of any human warmth and compassion. I was dumbfounded.
At this point we were left just to our own devices, our own intuition, unequivocal trust in God and my scarce knowledge on dying I obtained from reading many, many years ago ‘The Tibetan book of living and dying’ and ‘Easy death’ by Master Da Free John. The circumstances we found ourselves in forced us to be very open with each other. I was listening carefully to everything my mother was saying and reading everything in between. I was acutely aware of changes in her psychological state and physical condition. My training in psychotherapy came very handy. We talked about her imminent death, the cremation, and the funeral. She told me what she wanted to wear in the coffin. The outfit was already prepared, folded neatly in the cupboard and ready for the occasion. She instructed me of all the bills, documents, and paperwork. Her admin skills were impeccable almost until the very end. At the same time she was already in another realm. She frequently felt surrounded by love and was often overwhelmed by the sense of gratitude for her life. She often sensed the presence of her parents and favourite auntie Mary waiting to greet her on the other side.
Last three weeks of her life were difficult. She was feeling very unwell and we had to rush her into hospital. She was given drips, steroids and every possible life sustaining medication. She was in and out of a state that at times didn’t resemble my mum as I knew her. She craved physical contact. I would often hold her hand, stroke her, and be as close as possible. She was not rushing to die. She lingered on. After a week in hospital, the doctors were ready to discharge her, satisfied with her progress. This seemingly good progress was artificially induced by stimulants, steroids and drips and was just a way to prolong the agony. At that stage she needed a professional palliative care in a hospice. I didn't want her to die in hospital, which don’t take kindly to dying patients. They are left to themselves, with no extra care or help. At the moment of death, relatives are often asked to leave the room. The bodies are shoved into a fridge within two hours after death.
I wanted to be with my mother till the very end. I needed to be free from the barbaric hospital rules of having to fight with institutionalised ignorance at the most crucial moment of our life. I wanted to have some say in the matter, some level of control, some choices. Upon arrival into a Catholic hospice, her last home, my mother looked around, and said with joy: ‘I am in my Father’s house’. She was. The place permeated peace and tranquillity. She was immediately taken off all the drips and steroids. The only medication left was the morphine to keep pain at bay. It was Friday afternoon.
On Sunday morning she greeted me with her last smile. Sitting propped on the pillows she was breathing heavily, her eyes looked clouded and disconnected. When she said :‘This is it, this is the end’ I didn’t know whether to believe her or not. But I knew my mother. She was very acutely aware of herself and her condition. If she said that, she knew what she was talking about. This Sunday morning was particularly quiet. There were no visitors, and out-of worldly silence fell in the room. The rays of sunshine were peeping through an arched window and dancing round a picture of Jesus and Mary in a loving embrace.
My mother fixed her eyes on that picture. All of a sudden we were an inexplicable sense of peace, feeling almost elevated to otherworldly realms. I intuitively knew she was close to dying. I wanted to support her in her passage. I told her about a beautiful garden, full of colourful, lovely fragrant flowers; smells of fresh meadows, freshly cut hay and chirping birds. I was helping her to reconnect and recall in her mind all the familiar sights from her youth in the village that she loved so much, which I knew would be of comfort to her now. In a few moments her body looked a little more relaxed and open and her face smoothed out a little. Just then the nurse came in and asked to me leave for a few moments in order to give my mother her next injection of morphine.
By the time I came back 10 minutes later she was was on her way out.. She was sitting with her head slightly backwards as if frozen in that position, her gaze was fixed at one point at a distance, her mouth round open. She was motionless. The only sign that she was still alive was her very shallow breath. I remember thinking, that when this breath stops, any moment now, this will be the end. The real, the very end. I was watching that breath and waiting, as it was getting less and less frequent and very shallow. Together we were suspended in the timeless realm of the inevitable. And then my mother’s shoulders slightly rose two consecutive times and with it, she gave her last breath. Suddenly she was very, very still. No motion of any kind, no movement. Whatever was animating her before, now has slipped away. She was no more. Last time I saw my mother a few days later, when the body was ready to be cremated. She was lying in the coffin in her favourite outfit, a simple black skirt and a white blouse. What touched me deeply was that the same rose that the hospice nurse placed on the shroud was now lying on my mother's chest still quite fresh and alive. As if she wanted to tell me that life goes on and never dies....
Dying with dignity in Switzerland
The subject of euthanasia is a very delicate one. It is also plain shocking for many. We don't know how to approach it, what to think of it, how to react and what to say. It provokes strong, mixed emotions that often result in moralistic opinions based on religious affiliations one happens to support. In general it seems to be a virgin ground for most of us, until one comes face to face with it. The reality of it sometimes is totally different to what people imagine it to be.
The story is about T., my husbands old auntie. She was single, and enjoyed her life as a teacher of four languages and a bookseller. She lived all her adult life in St. Moritz, loved the mountains, good food in good restaurants and had many close friends. Last ten years she spent in an old people's home and when her condition deteriorated a year and a half ago she was moved to a nursing home in Davos. At that point she was in a wheelchair, unable to do anything for herself, almost completely blind and incontinent. The quality of her life diminished dramatically.
Last November she phoned out of the blue and said that she'd had enough. She was very clear that she wanted a way out. Life became unbearable to the point that euthanasia seemed the only logical answer. She already discussed it with the nursing home, but her wish was denied by the medical staff on site. She turned to her close friend in Zurich who agreed to take the matter into her hands and organize it.
At this point we were faced with the first big dilemma. What are we supposed to do? Are we to pretend that nothing is happening, ignore it and have nothing to do with it, or do we assist her in some way. What is the right thing to do in such a situation? After some deep soul searching we decided to go to Davos at this poignant time. Her closest relatives made a different choice. The difficulty of the situation proved too much for them to face. T.'s friend from Zurich found a small, local, cosy clinic called EXIT which was prepared to administer euthanasia. All the legal procedures and preparations took more than six months to complete before the 'go ahead' date was set up. T. decided to do it on Wednesday 12th of June... which happened to be her 88th birthday. At first we thought it was a joke, but after we realized that she really meant it, we thought why not? Why not celebrate a birthday on the day of her death? Anyway, who says how to celebrate birth....or death and in what follow order? It will be quite novel to attend a funeral with the deceased-person-to be still alive and present. Unusual, unconventional, may be yes; but perfectly do-able.
We arrived in Davos on 11th of June. T. was in high spirits and happy to see us. She thoroughly enjoyed a dinner out and had a pint of beer and half a bottle of wine. Later on that night I went to her room in the nursing home to prepare some clothes for the trip to Zurich and I suddenly realized that I am dressing her for the coffin. The following day we turned up at the nursing home early in the morning. Four of her close friends were already there and the whole 'birthday' party was ready to set off to Zurich.
At that point we faced the second moral dilemma. What do we tell the staff of the nursing home? We obviously can't tell them the whole story... We decided to mention only half the truth that we were taking T. out for her birthday treat to Zurich. When the dreaded question came about the time of her return, we diplomatically twisted the answer. It worked.
The journey to Zurich lasted not more than two hours. It was a sheer delight to drive along Swiss windy roads stretched like a ribbon round the mountains on this sunny Wednesday morning. White houses with red and pink trailing geraniums, dotted across hills and forests looked like postcards. Crisp mountain air mingled with fragrance of freshly cut hay. We were silent. May be because it was rather noisy as the windows of the car were wide open..... or may be we just didn't know what to say in the anticipation of the day.
At midday. we arrived at a luxurious hotel perched on a hill top overlooking a lake below and Zurich at a far distance. We were greeted with a glass of champagne on a sunny terrace with breathtaking views. T. was given a huge bouquet of red roses. She had a hearty meal with few glasses of her favourite wine and seemed to enjoy every moment of the festivities. But the atmosphere was charged with mixed emotions. All seven of us laughed, joked and cried, all at the same time. We found ourselves in a most surreal and bizarre situation. On the one hand we were celebrating T.'s life and friendship with her, remembering all the lovely moments each of us spent in her company at some point in the past. On the other hand, we had only a short time to make a closure, to round it off, to say final good byes, to say everything that needed to be said.... all in one swoop. Amazingly, with all the mixture of conflicting feelings and emotions there was an aura of rightness and appropriateness of it all.
At about four o'clock we took T. on the terrace where she sat in complete stillness and silence looking at the distant peaks and forests. I guess she was saying good-bye to the mountains she loved so much. I don't know how much of this beauty she could actually see, but views like this were so deeply etched in her memory that she could easily recreate them in her mind. That's what she probably did as she was sitting with her face turned towards the sun, with a gentle, happy smile on her face. And then she said quietly but firmly: 'It's time for us to go'. It was indeed. The appointment at Exit was scheduled for 5 pm. We still had to make our way through the rush hour in Zurich.
It turned out to be another point of heart wrenching decision for the members of our party. Two of the friends couldn't face the final part of our get together and opted out. They drove away sobbing loudly. There were now just the four of us left to stay with T. till the very end. Exit turned out to be a small clinic situated in an ordinary block of flats. We were welcomed to a pristine clean reception area with a big rectangular table and a little kitchenette. Minute by minute the dreaded moment started to become a reality. We were offered a drink. T. had another small glass of wine, which she drank with a serene delight on her face.
The lady in charge started to explain the procedure. In a few moments T. will be given a drink to calm her stomach. After twenty minutes she will be taken to a little bedroom next door and given a final drink. If she wants to change her mind, it's absolutely fine at any point. But after the final drink there will not be an opportunity of return. All the explanations were crystal clear. Is she prepared to go ahead with it? T. agreed. She drank the first, clear liquid calmly and without hesitation. It could have been a glass of her favourite wine.
We were all sitting in complete silence as if watching a film in slow motion. The next 20 minutes were the longest 20 minutes of my entire life. We didn't know what to say and how to behave. Nobody had a ready script for the situation like this. If I had any choice I would have run away at this point. Neither of us actually believed the reality of the situation. And yet it was happening right in front of our very eyes. She was going through it. She meant business. Only then did we realize that there was no way out of it, we had to go through it with her till the very end. An awkward silence was even more silent than before. Those twenty minutes lasted what seemed like a life time. But they came to an end and the final phase of the procedure was just about to start.
T. was asked again if she was prepared to continue. 'Yes, of course. That's what I am here for', she said cheerfully. 'Would you prefer to do it on your own or with your friends present?' 'What's the difference, whatever.... But all of you might as well be there'. Now the inevitable, imminent and dreaded end was becoming a reality. Deep down each of us secretly hoped she would change her mind, and if not for herself, at least for our sake and let us off the hook. Obviously fear and selfishness tend to have an upper hand in moments like that. But no, there was no escape, no way out. T. was taken to the room next door and as my husband was helping her to sit on the bed she cracked another joke 'Shall we dance?'. It was a double joke. She never danced in her life. She had polio in childhood which left her with one shorter leg. But the atmosphere lightened up. When the final goodbyes, with love and tears mingling together were over T. was offered the last drink. It was just one and a half inch of clear liquid. 'When you drink this, there will be no return, you realise it? Would you like to proceed?, the final questions were asked.
'Within a minute of drinking the preparation you will feel very tired and fall into a deep sleep and you won't feel anything.... and that will be the end.' Like before, T. took the glass to her mouth and slowly drank the liquid. There wasn't a tinge of hesitation, self-pity or fear. She drank it with calmness, determination, clarity of purpose and peace. Within a minute she was unconscious and then the body displayed signs of seizing to function. In less than ten minutes she was gone.
When later on that night her body was being arranged in the coffin, we covered her with the red roses we gave her for her birthday. For an 88 year old she look beautiful and serene. It was the last time we saw T.. Our mission came to an end.
T. accomplished her goal. She did it with fun, joy, poise and self-determination. There was no drama, no tears. She just enjoyed a day out on her birthday. She treated her friends to a most exquisite meal in a most exquisite place. She was just her usual delightful self which her friends loved so much. We celebrated her birthday and her funeral all in one. Except that this one was with the deceased person-to-be still present at the festivities. Alternative way to go? It certainly was. And why not?
T. was now liberated. She died with dignity and being fully in control of her own destiny. Just as she was in charge of her life, so she was fully in charge of her death. She lived and died in style and on her own terms. And, I guess, we felt liberated as well. We were liberated from our fear and dread of death and dying. And that was the biggest lesson she gave us that day.
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