Dying in Today’s World
After attending a lecture I wrote this blog. I offer the reader an insight into my understanding of it - naturally I have sensationalised and over-exaggerated Chinese Whispers style and offered some of my own reflections and relationship with death.
In the 50 years since the hospice movement started, lessons from research have revolutionised care of the dying in the UK and in many places around the world. Yet the cruel myth that opioids shorten the lives of those with severe pain from cancer and other diseases leaves many denied the treatment they deserve. Those watching the person they love die carry the memory for the rest of their lives.
The concept of a ‘good death’, and how it can be achieved will be discussed, including the importance of open conversations with children being bereaved. Discussion will also tackle some of the issues around physician- assisted suicide and euthanasia.
Dying in Today’s World
Dying in Today’s World
The lecture given by Llora Baroness Finaly of Llandaff is available on YOUTUBE https://www.youtube.com/watch?v=ZMaal9T6Of4
When Bevan, above, introduced the NHS after WWII, it was to transform the health and wealth of the UK nation. Aneurin Bevan, was the new Minister of Health for the government. https://www.independent.co.uk/news/long_reads/nhs-70-years-aneurin-bevan-health-welfare-uk-politics-a8421781.html He represented Labour and was reported to have been responsible for housing as well as health. Bevan believed that the state should guarantee a free health service for all, which automatically deprived the voluntary hospitals of their traditional sources of money. As far as the hospital service was concerned, the new proposals went a long way to meet the desires of the medical profession and the voluntary hospital movement.
Public funding implied public control. Bevan had at his disposal a wide range of expert reports; service considerations were covered by the hospital surveys, which confirmed the haphazard growth, the unevenness and the deficiencies of the existing arrangements; there was a report on medical education from Goodenough, and reports on London from the county council and the joint coordinating committee. His rationale for free treatment was compelling, despite the heavy opposition over a sustained period, the concept was realised and transformed the health and wealth of the UK and would be the envy of the free world.
When penicillin was introduced in 1942, it was successfully used to combat infections, not all, but significant numbers of people who would normally have died from infections were now surviving after being treated with penicillin. Infections were the biggest cause of death up until 1955, when heart disease quickly took over. Indeed, when I look at the older people who have died in my own life between 1995-2015, 100% died from cancer or heart disease or infection.
Recently I reviewed the death of the main cast of Gone with the Wind, all were born in the early part of the 20th century, all deaths seem to typically correspond with those as detailed in the ONS charts above.
Hattie McDaniel – 59 - breast cancer
Butterfly McQueen - 84 – burns
Vivien Leigh - 53 – TB
Clark Gable - 59 - heart disease
However, as we venture into the 21st century and nearly a century of using penicillin many infections are becoming resistant to its once potent capacity, mainly due to overuse; overuse in animals and people. In India, Eastern Europe and Russia there is a lot of TB. TB is a highly contagious disease that is proving to be resistant to penicillin and a once nearly eradicated disease in western Europe has now been on the rise for over a decade.
In 1967 Cicely Saunders, introduced a new concept and policy into her practice which was live until you die. Hence the birth of the hospice movement. Up until this point people were ‘left to die’ and their thoughts and appropriate care was not always carefully considered.
I have read two books over the last few years, which reference end of life and how communities might respond. Acabadora also given the title of The Finisher. The book addresses the theme of death within an Italian community.
The anguish of a prolonged death can be painful for all, including the one who is dying. Facing the last step with compassion and dignity across all communities is difficult and one that rarely we become an expert in managing, but we are more likely to fear. Taboos, coupled with an atavistic community, means that confusion of how to deal with and respond to death transcends across generations.
In a small village in Sicily some relatives of those dying prefer to implement an age old tradition of using an acabadora to end the life of what they see as the suffering. There are various methods used by the acabadora to ensure a premature death, as the book details. A must-read book and a practise still discreetly in use today, I have no doubt.
I believe we provide our communities with compelling arguments to ending life prematurely because of our values of love and compassion, which leads to ideologies centred around why we should ‘put them out of their misery’ when in fact it is often our end of misery that we are expediting. Physical pain often leads to emotional and spiritual wrangling and contemplations which then cause us to make decisions that we rarely make. There are right and wrong answers, but there are laws and statutory policies, that hopefully have been well researched and documented, which prevents the heart from ruling the head. So, we while we do take their end of life into our own hands, we shouldn’t and the choice must to be left to the patient and their voice interpreted with absolute integrity.
Recently I watched programme about Richard Rudd, https://www.telegraph.co.uk/news/health/7896432/Parents-of-coma-blink-patient-Richard-Rudd-speak-of-emotional-turmoil.html who, after a tragic motorcycle accident, was left seriously ill and paralysed, at one point he was pronounced brain dead. Prior to the accident he told his family that if he was left a quadriplegic he would want to end his life swiftly. However, during lengthy assessments doctors determined that despite his severe disabilities and his previous wish to die should he find himself in this position, he did want treatment to continue. Again, this story demonstrates the need to be determined to involve the patient as opposed to taking the decision into our own hands regardless of the patient’s previous wishes.
The gap between reality and hopes and aspirations can be narrowed if conversations are had and integrity of the patient’s wishes are used between them and the care giver. An important practise within any palliative care model. With one case study a woman was given talking therapies and it enabled a significant drop in her pain medication. Often it is the prolonged pain that is often the cause of the person’s desire to enter an assisted dying programme.
In Travels with Epicurus, a book centred around how to live a fulfilled life, author David Klein outlines the complexity of knowing when it is suitable to offer euthanasia. Indeed, during Llora’s lecture she states that when lethal doses of medication were administered to the patient it still takes between 1 minute and 500 minutes and in that time, they are rarely offered suitable palliative care as according to Cicely Saunders’ model of palliative care. Llora also stated that 8 in a study of approximately 300 awoke or survived the potential lethal dose and all 8 decided not to retake the medicine but to die naturally. These statistics generate more questions about the practice of human euthanasia.
Death is a gentle absence of life. Palliative care is essentially the science of helping people
make sure that they are valued until the last minute of life – living until you die. Those that work in hospices seemingly develop an acute awareness of when death is imminent. This is key so that loved ones can be present, offering appropriate comfort, ensuring that the patient knows that they are valued and so that appropriate medication and care can be given by the whole team. Often in general hospitals care givers do not possess the necessary expertise to identify the imminent end of life and so patients are left on their own and feelings both by the family and the patient are left open along with many questions. The gap between aspirations and reality are not always realised in these instances and are a cause of much anxiety.
Nowhere is it more obvious that we are connected than when we are dying. Across all nations and communities we use this time to remember the life with the aim of showing love and ensuring our loved one dies with dignity. However, within those last moments we as the care giver are encountering our own suffering and while we love them and usually don’t want them to suffer, we don’t always make the right choice for them as to the care as to the medication as to their needs as to their aspirations etc, as they enter the last stage of death. Often the thought of the ones that are witnessing their loved ones dying are I just want you to stop suffering or I just can’t live without you. Each of these extremes disables the witness to make unemotional decisions. Hence the need to listen carefully to the patient about their needs.
My dad, a stalwart. Never complained about pain, well sometimes he did, his teeth were the bane of his life. With dentistry in the life of a 1940s child being lukewarm at best he was destined to deal with this pain in the 1980s. I remember thinking he was brave when he went and had them all taken out and replaced with dentures when the thought of having just one tooth removed horrified me.
My mum had told me that he had been to the doctor several times about the pain in his back and neck, but probably hadn’t been completely honest about the severity of it. I agreed to accompany him at his appointment with the RHRD in Bath. I remember telling the doctor that my dad doesn’t roll around in pain unless it was bad. They kept in him and agreed to control his pain and investigate. Sadly, he was diagnosed with terminal cancer.
Not knowing how my estranged brother for 4 years found out that our dad was dying, but he did. From the day of diagnosis to the day of my dad’s death it was a total of 3 months. During that time my brother provided most of the palliative care once at home with absolute love, much to the relief of me. I couldn’t imagine managing the bodily functions of my dying dad. Which returns to what Llora cited which was ‘we just want to be valued and die with dignity.’ He would have died with dignity if I did have to offer care as I would have overcome this initial embarrassment, but I distinctly remember being there once when my brother was changing my dad and thinking thank god you are doing that and not me. Not ever having seen my dad naked before determined this level of sensitivity and embarrassment. I had seen him half naked just once during a celebratory bath he had taken after the instalment of the bathroom to check that it all worked. He had completed this in the early 1970s; although the water was soapy and murky, so I still didn’t see anything. We had one tin bath until that point.
Dignity is a sense of having personal worth and this enables us to live until the last second as opposed to having the thought I just want to die. I suggest when pain is managed well and love is offered right up until the point of death we die with dignity and in peace and so do many of the surviving loved ones in time. If we feel embarrassed or great pain or unloved, I imagine we die restlessly and so those who continue to live around us may also be restless.
Needless to say, that my brother’s return to our life was as a consequence of us being connected and
his desire to ensure that he validated the man that had given him his life and values and shown him much love. It was a blessing in many ways that my brother returned.
Llora went on to explore the power differential between the care givers and the types of abuse that can be rife. She said that she had been conned several times as people at times of great sadness can appear to be so sincere and for fear of not wanting to challenge someone when they are bereaved or at the point of bereavement means that her guard is down too.
In March 2017 the House of Lords debated assisted dying and the debate has always been why not. Llora provided me with a compelling argument as to why we do not engage further. Identifying the point of death is complex. https://hansard.parliament.uk/Lords/2017-03-06/debates/D4662B1E-E4DA-40BF-99F1-254F2E14D8FF/AssistedDying
- Often the patient feels a burden – address this and reduce the gap between reality and aspirations and hope – offer networks, opportunities and therapies
- Often the patient feels pain – carefully manage the medication and the administering of this – although 80% of the worlds dying do not have access to morphine 6% children.
- Often the patient feels depressed – offer talking therapies and other support networks.
When we introduce laws, Llora goes on, these are not just regulatory instruments, they are social messages too. If we think of the introduction of the smoking ban in enclosed public spaces and how this has led to a social response to smoking in all public spaces, this serves as an example.
Llora shared several case studies:
- In the Netherlands a young person – aged 29 https://www.bbc.co.uk/news/stories-45117163 was given the opportunity to die using the legal assisted dying programme, because she was depressed. Consequently, many others in Holland have now requested that they die using the assisted dying programme because they are depressed. With depression the patient often displays a disparity between what is reality and their current state of mind. Surely this practice of offering euthanasia has to be questioned if the patient is depressed.
- A patient from Oregon, Barbara Wagner, upon realising her lung cancer had returned and was likely to be terminal, was told by her health insurance company that she was covered for an assisted dying programme but not for her cancer medication and treatment programme. This led to a dilemma over the assisted dying programme and the integrity of the health insurers and the medical cartel. https://www.telegraph.co.uk/comment/personal-view/4736927/Right-to-die-can-become-a-duty-to-die.html
- Finally, Roger Foley was another victim of this policy of assisted dying being offered over appropriate care. He outlines his removal of rights to be appropriately consulted again a desire to be validated and loved until he point of death. https://www.ctvnews.ca/health/chronically-ill-man-releases-audio-of-hospital-staff-offering-assisted-death-1.4038841
There have been cases of victims, who had once agreed to assisted dying and then reversing this permission, being held down and forcibly being given the medication.
- Furthermore, when 56% of 34% of UK doctors were surveyed and they said they would not participate in any assisted dying programme and only 23% of the 34% said they would participate. 77% declared their desire to or not know whether they would is a decision that is made possibly owing to their loving values and determination to preserve life as to end it prematurely.
Source of ONS reference