Quality not Quantity of Life Sept 2023

 

The following is my musings on the importance of prioritising quality over quantity of life, especially, though not solely, as we age - and looking at some of the available options available.  

Joyce Newell

September 2023

Dear friends,

Many of you know that I have been living with moderate health problems for the last year or so that have led to me considering whether I want to potentially live many years in discomfort and pain possibly in surroundings I find unpleasant. I am more and more convinced that I personally am prepared to actively seek quality not quantity of life, and to end my life whenever my quality of life becomes unacceptable to me.

How do I define the quality of life that I feel makes life worth living? I value fun, play, curiosity and creativity which I make part of my life through contact with others, and with nature, and reading, and obtaining information and ideas through these sources, and through computers. I believe regular deep sleep, contact with interesting people, good nutrition and exercise are ALL essential for a healthy and worthwhile life. I would NOT want to continue to live if ANY of these were not available. Unfortunately, at least some, if not all of these factors are unavailable in almost all forms of institutional care, especially hospitals. In addition, few, if any, are not given high priority by our medical system.

This somewhat rambling document is a summary of where my thoughts on my future are leading me. I would like these thoughts to start a discussion on the challenges of living in an ageing body with anyone willing to explore these ideas. Our 'health' system struggles to handle questions of the timing of death as it often prioritises length of life over quality of life, and our society largely ignores the financial, environmental, and social impacts of extending life at all costs.

Our medical and legal systems are definitely not structured to encourage people to choose the timing of their death, especially if they do not have a diagnosed terminal condition. As I see it, the most accessible legal option open to shortening my life without a terminal diagnosis or the use of poisons (which are mostly hard to access and/or reliably administer) is to voluntarily stop eating and drinking (VSED). With VSED, death occurs by dehydration, not starvation which is consistent with the body's natural dying. The process takes about 2 to 3 weeks. The final week can include pain, slowness, decreasing energy, mental confusion, restlessness, drowsiness, and loss of decisional capacity as toxins build up in one's body. I therefore fully realise and accept that VSED needs courage and determination as well as suitable timing as it requires advanced planning and action while one still has the mental focus, energy and creativity to organise necessary support and to carry it through . It definitely is not an easy way out that can be taken lightly and without consequences for those around me.

I currently have no plans for when I might take such a step. I am however working to put plans in place so I can act in the short window between the start of worsening of symptoms, (physical, mental, or both) and leaving my decision until it is too late, and getting trapped in a system I do not trust to give me the quality of life, or the ending I might choose. This is especially challenging for dementia, as if one is deemed incapable of making rational decisions, there is no support available to shorten one's life.

The foundation of this discussion is Personal Choice. The choices we make as individuals depend on our individual beliefs about how our lives should unfold as we age. I recognise that personal choice on when and how I die also raises many complex and almost unanswerable questions on how responsible I am as a member of our community to others, and the broader question on what makes any life valuable.

1 Many people choose to hang on to life as a challenge or achievement coming from personal, often unconscious and unquestionable beliefs on the sanctity of life, the need for hope, and the 'will to live'. These beliefs are supported by many religions. In reality, all life relies on the consumption and/or cooperation of other living creatures. I feel that my life too, as part of these cycles, should end whenever these cycles 'decree'. I am part of nature and its natural cycle of life and death.

2 Our society is becoming more and more focused on greed, - more material goods, more experiences, and most of all more time. Many people focus on completing a stated or unstated bucket list, and never consider simply saying 'enough is enough' and letting go. The fear of missing out (FOMO) is a very real part of most of our lives, even though our lives have been enriched by amazing experiences and rich and varied lives unimaginable to previous generations. By my age (77), I have had more than enough excitement, challenges and delights to fill a lifetime without needing yet more and more and more.

3 Most of us have been brought up to trust and obey our allopathic medical system, hold medical doctors in high regard, and to believe in their 'wisdom' instead of evaluating health issues ourselves. We are accustomed as a society to age under medical direction with the vast majority living with a moderate to high level of discomfort partially masked with pharmaceuticals, often with undesired side effects including slowly poisoning ourselves and our environment.

4 Most of us have the sometimes unconscious desire to follow the herd and to stay within the limits others set instead of thinking for ourselves. This comes partly out of fear of the challenges and emotional costs of finding one's own way. Finding one's own path can be frightening, lonely, challenging, and insecure, while staying with the crowd and accepting their wisdom gives perceived security in numbers, even if the validity of these beliefs may not stand up to open-minded scrutiny.

5 And finally and perhaps most importantly, the fear of death and the unknown is very strong in our society, and constantly reinforced by the media, and often also by the government. Many in the medical profession also do more to strengthen the fear of death than they do to help people accept the inevitable. Most of us live very separate from the reality of death, and have a strong dislike for endings. It is thus difficult to remember that death is completely natural, and just another step in the circle of life.

There are three main points that I consider important in making a decision about how long, and under what conditions I am willing to continue living.

1. Quality of life as discussed above: this includes being able to move and care for myself independently, reasonable bodily comfort and control, the ability to communicate and receive communication, and to live in comfortable, quiet surroundings with ample contact with nature. As we age, we all slowly switch from being engaged with life to being more passive and a different kind of person satisfied with smaller and smaller elements of life as one's mind loses its edge. To me, the challenge is to be aware of these sometimes subtle changes, and to be prepared to die rather than to continue to live in conditions that are unacceptable to me.

2. A reasonable environmental and societal cost of continuing to live. I do not wish to use resources for no or very limited personal gain that might be better used by others to maintain quality of life in our community. This includes physical and financial resources, and the time and energy of others who might live fuller and healthier lives without having to be limited by my limitations.

3. Spiritual factors. I have lived many years trusting my 'inner voice' in choices I make, and following my own body's demands, and trying to respect both my 'soul' and body. For me, death is a time to open new doors. Many of my thoughts on death are summarised in my poems 'The Illusion of Life' and 'Approaching my Ending'.

In summary, I fully recognise that my decision to kill myself when life becomes untenable for me is a personal one which many may not understand, and may vehemently disagree with, especially if I do not have (and have not sought) a terminal diagnosis.

I hope to be able to choose to act at a time I feel is intuitively right for me, instead of having to bear an unknown, and possibly considerable period of intolerable suffering, or living under the influence of 'pain killers' which have numerous side effects, and do nothing to cure the 'problem'. In addition, I am hoping to act while I still have the decision-making capacity to take this mentally very demanding path. It is difficult and very personal to distinguish between the natural consequences of ageing – aches and pains, decreasing stamina/energy and strength, and some mental deterioration – and the maintenance of a worthwhile quality of life.

I fully realise that this will mean I will 'miss out' on many enjoyable experiences and time with people, and in places I value. At the moment I am focusing on communicating clearly as I can about my future concerns and plans, slowly organising support from family, friends and my doctor, and getting my affairs in order.

Another factor may well affect when, and if, any of these musings become reality. I believe that the current state of our world economically and politically, and possibly more importantly, the increasingly rapid development of environmental and climatic disasters will make most life on earth impossible well within our natural lifetimes, - possibly within months or at most a few years. While I do not want to run from whatever possibly unpleasant challenges we may face, I want to be aware that if I can make the end of our civilisation easier for others by getting out of the way and letting others have any remaining resources, then I am prepared to end my life prematurely.

At a time with an unknown and unknowable future in so many ways, we can only hope to be able to let it unfold with acceptance, and equanimity – and to value each day as it comes. I welcome your feedback, and further discussion of the many issues touched on here.

Joyce Newell 7 September 2023