Wednesday, 8 June 2011

For Thou art with me

There’s a contentious programme coming up on UK BBC TV, about assisted suicide and euthanasia.

Our Alice was telling me about it this morning – she’d been reading about it online.  Apparently views are expressed to the effect that it adds to a person’s suffering to oblige them to go all the way to Switzerland for assisted suicide, putting them in a position where they have to make the journey at an earlier stage of illness than they would really have liked, as late enough to die would be too late to travel.  She said that the article she had read made mention of a lethal dose, said to be available in the US, that a patient could have on hand in case of need, and that views had been expressed in favour of such a thing being available in the UK.

I have quite a bit of first-hand experience of death and dying . . . er . . . well – technically, second-hand, I guess, but you know what I mean!  I was for several years a hospice chaplain and I’ve worked as a care assistant in a palliative care unit for terminally ill people.  I’ve pastored congregations with many elderly members, and am familiar with the struggles of their journeys, and sat at their bedsides as they made their Great Journey out of this physical realm.  I nursed my husband at home to the end of his life, still continuing to share the same bed with him, administering his medicines, caring for his tracheostomy paraphernalia and all his needs, and staying right there beside him up to the end.  So death is quite familiar to me, and I would like to make some observations about this TV programme to add into the mix of your thoughts if you plan to watch it.

When I was a younger woman – in my twenties and thirties – I was in favour of assisted suicide and euthanasia.  I no longer am.  I am not in favour either of excessive intervention to prolong life.  I am in favour of good palliative care, informed and educated pain management, and good social care for families who may be put under serious financial strain by taking time and energy to support a dying person.

With regard to assisted suicide and euthanasia in Great Britain, I do believe that once this genie is out of the bottle it won’t go back, and I think that many people who are vociferous in expressing their opinions are clearly unaware of the opportunities that exist at the present time.  You don’t need to go to Switzerland.  My husband died of a particularly cruel and horrific illness – he described himself at one point as feeling like a man trapped in a maze with a pack of mad dogs after him. When my husband was dying, he had a number of medical attendants in two different hospitals, so I want to make it clear that you will not be able to establish an identity from what I am about to say.  One of his doctors, in the last weeks of his life, said to me very seriously that the prescription medications we had at home (a quantity of diamorphine and other powerful meds) were now our property; they belonged to us, what we did with them was up to us and our responsibility.  The doctor said that if I inadvertently gave my husband more than I meant to do, that would be all right and I mustn’t worry. 

I saw what the doctor meant.  It was the same as when a policeman came to address my Religious Education class, at a school where I taught, on the subject of safety and self-defence.  He explained to them in a read-my-lips kind of way that he could not advise them to carry in their handbags (purses US) when they went out on the town a bodyspray for the purposes of spraying it in the eyes of anyone who tried to attack them, as that would be an offensive weapon, and so against the law.  But if they happened to have the body spray in their bags for the purpose for which it was intended, and happened in a moment of panic accidentally to get it into somebody’s eyes, that would be understandable and okay.

I never did give my husband – by mistake or on purpose – any overdose of his medications.  It wasn’t necessary.  The love and support I and my daughters (especially Hebe) gave him took away his fear and distress.  The dying part was easier than the part that came before.  In his last few weeks, sitting in his room, every day he would say how lucky he felt, how peaceful and how blessed.  I ensured he had palliative care support from the Hospice At Home team and the district nurses, and that he was never alone except when he wished to be.  One of the things that strengthened and soothed him almost more than anything else in his last days was music.  He listened to music most of the time.  Sacred music was playing when he died.

In the churches of our Methodist Circuit (I was a Methodist pastor then) everyone was praying for him.  Praying is powerful and it helps if the prayers of the people are following the flow of the way things are, God’s will.  So I made specific prayer requests, asking them not to pray that he be healed, but that he die swiftly, peacefully and painlessly.  People coming to our cottage to visit remarked that it was almost pulsing with love and light, and one way and another with all that prayer and Holy Spirit power, so it was.

At an earlier stage in my life I had wished it were possible to have handy at home some lethal medicine, so that if something unthinkable happened – a terrible accident where someone was screaming in agony and too mangled to live, or a nuclear war or something, I would have  the means to offer them a way out.  But when my husband died, I had the opportunity to hang onto those powerful and lethal drugs – as the doctor had pointed out, they were mine.  I didn’t, though.  I tend to depression and am sometimes suicidal, and one of the symptoms of depression is a (mistaken) sense of lucidity in the depressed person – that you are the only one who really sees and understands just what a terrible place the world is or what a terrible person you are.  I wanted to put out of my reach any possibility of acting on such times of apparent ‘lucidity’ when they visited me.  So, I do not think it’s a good idea to have lethal medicine on hand in the ordinary home.  Besides which, imagine if a dying person had their lethal dose ready in the drawer, and decided in the last stretch of life to have a farewell gathering for their family and all the tribe came round.  I can easily picture a scenario in which a couple of kids wandered off from the melee and got their hands on those controlled drugs and the wrong person died.  Can’t you?

If euthanasia became legal here, as many others before me have pointed out, before too long there would be economic pressure brought to bear – old people lingering on in expensive hospital beds, that kind of thing.

Many people who advocate euthanasia do so because they imagine that in a terminal illness things get worse and worse and worse until eventually you die, but it isn’t like that.  By the time the Dignitas-clinic-in-Switzerland stage is reached, you are almost through the wood.  It’s the same as having a baby – it’s the first stage of labour that’s the tough call, not the second stage.  I have travelled right up to the door of death with many many people, and I can assure you that in my experience the last bit is not usually too bad.  It is peaceful, calm, natural and easy.  The struggle is done.  Very often friends from the other side of the barrier between life and death come to meet them, to collect them.

And often the last weeks and days of life are rich and wonderful.  It was so with my husband.  At an earlier stage in his illness he was begging to die, and distraught when on the hospital nurse’s advice I wouldn’t give my permission for him to be denied all food and water – she said it would be a horrible death and an inadvisable course of action for him.  He went through some terrible things, but not in the stretch of time in which euthanasia would have been applicable.  By the time he reached the stage where euthanasia advocates imagine the assisted suicide taking place, he was at peace, his pain was under control – and he was dying anyway.  The way out was opening.    When people say we should have euthanasia clinics here so terminally ill people can wait to the last minute to go to them, they’re missing the point.  It’s over by then, there’s only the peaceful bit to go through.

I once accompanied a church member toward death who had a terribly aggressive oral cancer.  She could feel it growing every day.   The diagnosis told her it was terminal, and that death would come quickly.  She was terrified of dying of the cancer and of its progression.  During the winter she had cancer, life offered her a way out – she got pleurisy and this was expected to develop into pneumonia.  I was intrigued and surprised that instead of saying “Good!  Here we go!  Ticket home!” she was eager to take antibiotics to clear it.  When she reached the final stage of her illness, the cancer reached the point where it would breach the wall of the blood vessel in her throat, and death would be swift and spectacular.  She was afraid of that, and asked to be spared the last events of her life by being kept sedated, which she was.  She remained in her own home under sedation administered automatically by a syringe driver, and slept through the final days of her life.  My husband also, once oral pain relief was no longer holding back his pain, was fitted with a syringe driver and spent his last few days under sedation.

The people I have known who have been in pain and misery have not yet reached the category for which assisted suicide and euthanasia is advocated, which suggests to me that if this became law then we would see the category of suitability widen very quickly.  The people I have known in real distress have been in earlier stages of AIDS or cancer, or suffering from depression associated with illness – post-stroke depression, for example.   And surely we are not suggesting that anyone who feels life is unbearable should be given carte blanche to end it all?  We’d be short of a great many teenagers who could have made it through turmoil to adult happiness.

Please do not be taken in by the advocates for euthanasia.  Many of them do not have broad experience of impending death, and many are motivated by personal experience of fear, dread or grief rather than having had the opportunity to observe and consider death.

All the opportunity to manage necessary ending of life is already available for those who desire it, offered discreetly and advisedly.  It cannot be discussed because of legal implications, but it is there.  Clinics for euthanasia and suicide would not improve the profile of care provision, and in fact would likely undermine the palliative care provision we now have.

I want to leave you with one last story.  In a church where I was pastor, I went with a church member to the bedside of her dying mother.  The mother had been suffering from Alzheimers Disease for a decade, and had for some time been in effect lost to this world, a small withered body in a bed, unresponsive and incapable of anything.  Any advocate of euthanasia would have marked her as a prime candidate. 

The dying woman and her daughter were both faithful Methodist believers, and arriving at her bedside I read to her Psalm 23, prayed the Lords Prayer, and then said this prayer.
Go forth upon thy journey from this world, O Christian soul,
in the peace of Him in whom thou hast believed,
in the Name of God the Father, who created thee,
in the Name of Jesus Christ, who suffered for thee,
in the Name of the Holy Spirit, who strengthened thee.
May angels and archangels
and all the armies of the heavenly host
come to meet thee,
may Christ be thy Pilot and give thee safe crossing,
may all the saints of God welcome thee,
may thy portion this day be in gladness and peace,
thy dwelling in Paradise.
Go forth upon thy journey, O Christian soul.

As we closed the prayer with ‘Amen’, a change came over the dying woman.  It was as though her whole being flooded with light.  Her face lit up with ineffable joy, wonder and an expression of absolute triumph.  And then she gave up her spirit to God, and she was gone.  I’m glad we saw that, her daughter and me.  It was her last, and probably greatest, Christian witness; and I do not believe that anyone would have had the right to subtract such a thing from her life.  It was also evidence to me that whatever is happening to the mind or the body, the soul shines steadily on until God in His mercy calls us home.

"The Lost Sheep" by Alfred Soord (1868-1915)


Anonymous said...

This is not an easy subject to share. But again, your honesty and love for others shine through your words.

Here in the US, I have watched the devastating effect of dying a slow death. But like you, I can not even think about taking matters into my own hands.

It is like trying to be God!

Our Lord will take our loved ones not one minute faster than they need to go. They will leave this earth precisely at the appointed time.

Thank you again for your candor dear Ember.

Pen Wilcock said...

I can still think of scenarios where euthanasia might seem appropriate, but I do think those are covered by systems already in place, and I think illness is usually manageable. The problems are fear and pain, and I can't see that those would be dealt with at all by legalising euthanasia.

Bean said...

Another deep and thoughtful post.
When my mother-in-law died, she had leukemia, she went peacefully. Sharon had such dignity has she lived with the illness, she never complained, she always had a smile on her face. We saw her on a Tuesday, she had a good day, she had made lunch, and joked that she had splashed spaghetti sauce on her sleeve. Later that night she had a brain hemorrhage and was rushed to the hospital, she never regained consciousness, she died 24 hours later. As she lay in the hospital death all six of her children, their spouses, and all 18 of grandchildren and 3 great grand children were around her bed, we held hands and prayed the Our Father together, throughout the day someone was always at her side. My husband was kneeling by her bed when she took her last breath, she started up, opened her eyes, looked at Dave and breathed her last. My husband will never forget it, he was so grateful to have that last moment with her. My husbands grandmother died in nursing home, she too was surrounded by her 6 children, their spouses, many of grandchildren and great grandchildren, she too had a beautiful death.
When I know someone is terminally ill I always pray that they will have a happy death, after all we are going to Jesus our Savior!!



Pen Wilcock said...

Thank you for sharing that wonderful story, Bean X

Unknown said...

This is a moving and thought-provoking post. Two events over this past year come to mind. The the most recent was sitting with a dying friend in a nearby hospice. The second was an incident on a tube train last year in which someone threw themselves under the carriage of the train in which I was travelling.

I oppose both euthanasia and assisted suicide but I have nothing but empathy for anyone coming to this point. Setting aside for a moment, the wishes of the individual, there a great many other people effected by such a death. The suicide I witnessed last year was at one and the same time ultimate 'self-harm' and also an act of violence. Peace be with all those who feel they have nowhere left to go.

Pen Wilcock said...

Hello friend, good to meet you. Thanks for your wise thoughts :0)

AbiSomeone said...

Sweet Ember ... this is a lovely post.

I happen to live in one of the two states in America which have assisted suicide laws on the books -- laws which are very specific in terms of which kinds of patients are eligible and the process necessary for approval. You might find this link informative:

Just yesterday, my almost 85 year old dad, who has been moved to assisted living because he is too big a man for my 85 year old mom to take care of at home, was referred to palliative care -- the precursor to hospice. Dad has Parkinson's (though not the shaking usually associated with it) and the vibrant man he was is not longer accessible. If he speaks it is in whispered words that are often gibberish.

Reading (frequently) your Hawk and Dove series, especially the final book, has been such a help to me as I journey with my folks ... just the other day I quoted Father Abbot: It is a tedious business, dying.

It is especially difficult for me, since they are 1,000 miles away and I cannot be there physically. But I am there with them every day in my spirit ... and just this morning I was praying that my dad would be strong to letting go of the last thread to this world. Very much like your prayer. And I pray that, according to our Father's mercy, he will move into that peace ... and that my mom will be able to witness it.

...again, I wish we were neighbors, sister ... but virtual neighbors will have to suffice!

Bless you, Ember....

Pen Wilcock said...

My prayer for the old ones in our family is that their old age will be contented and their passing gentle, easy and dignified.
God bless you and your mother and father, Abi; God lead them by the hand.

Small said...

Before I came to the computer this afternoon I was planning to write a random comment just saying thank you for your blog. I can't quite remember which I read first, 'In Celebration of Simplicity' or your online writing, but thank you for both.

Then reading today's post, I had an odd sense of timing - I've just come from a bereavement focus group, organised by the chaplaincy of the hospital I work at, to provide a space for feedback from those whose loved ones died as inpatients on how their needs were and were not met. I was permitted to attend as a researcher (social anthropologist) working on a related project about involving people in advanced care planning, including about resuscitation discussions / decisions. Hearing people's stories made me realise, not for the first time, how 'good' my mother's death(from metastatic cancer)at home was when I was a teenager. She was a medic and a Christian and as such lived out the end of her life knowing what to expect in both the progression of her illness and that this was not the end of 'real' life. We were very lucky to be there as her witnesses and companions.

The other thing I came away from this afternoon's meeting with was a renewed sense of a leading for me ultimately find a role in palliative / end of life care where I can be of use to people towards them having the end-of-life and subsequent death experience that they hope for. Which leaves me feeling very green and naive about what use I might be, but I guess a way will open if that's what I'm meant to do.

So, really, just a sense of coincidence, and thanks for your thoughtful sharing of wisdom.

Pen Wilcock said...

Hi turtlebat. I like those kind of coincidences: they affirm in me the sense of life being on purpose - unfolding according to pattern.

May God bless the path that is choosing you, and the good practice you have already had the chance to observe, so that you will be part of shaping the endings of people's earthly lives into luminous peace x

Julie B. said...

This was so very comforting to me, Ember. Thank you.

Pen Wilcock said...

:0) xxx

paula said...

Dear Pen,

Like your other readers, I found this post a comfort as well as illuminating on a difficult subject. I feel your love and compassion for those going through the death process (either first- or second-hand).

Currently I have nothing like this happening in my life, but the same philosophical questions arise over euthanasia for pets. And I have recently "had" to put a cat to sleep (and will soon have to face the same situation for another cat). I wish the kind of pain support you refer to were available for animals, because euthanasia is violence, no matter how you explain it away. The soothing language of "putting her out of her pain is a kindness" does not reassure me.

Yours in the Light, Paula

Pen Wilcock said...

:0( Thinking of you Paula, as you face these difficult decisions xx

Michelle-ozark crafter said...

As I read this I could not help but think that Christ who suffered and died on the cross would expect any less of me than to die my death which as much dignity as I can as He did. I think assisted suicide or whatever you want to call it is a horribly wrong thing and playing God. Like anyone else, I am not fond of pain and the process of death can be hard as is birth but that is how it is and much can be done to ease our passing from this world to the next. If my dear friend Mary, had chosen assisted suicide when they knew she was dieing may never have come out of her coma to tell us about her glimpse of Heaven and loved ones and hearing the voice of Christ. It blessed many, many people and Mary was given another year on this earth with those who loved her. No, I would rather take the path God has prearranged for me!

Pen Wilcock said...

Yes, Michelle. The times I worked in the hospice where people stayed for perhaps six weeks - usually no more - at the end of their lives, obviously with the deepest process of illness going on, I heard many many of them say that they would not have missed this part of the journey for anything, it had been one of the most blessed times of their lives.
Dying can be a time rich in blessing for the person dying and their loved ones too. I think what God asks of us is to work on the palliative care and loving support we offer as a community, so that reassurance is offered and terror and pain addressed for as many people as possible, and they are not left to struggle alone with any issues they may face.

Elin said...

I am not 100% against suicide for a person at the end of their life and the fact that someone else would put the needle in their arm and help them if it is their will is not problematic for me. I understand if you do not want to fight to the end and also if you want to. I would consider it if I was faced with Alzheimers or any illness that would mean that I would suffocate to death. I have worked with old people and Alzheimers scares me. I do not mean the natural senile dementia but when it debutes at 40, 50, 60 when a person normally has many years left and the person often ends up in a very bad state before they die. Being 'forgetful' at 80 is something totally different and it does not scare me at all.

Suffocation is something I have experienced as I have asthma and the panic I feel despite knowning what to do, what it is and why it happens is crazy. I cannot bear the thought of knowing I will die like that. I would consider taking my life if I knew that would be my death and I knew I just had to sit and wait for it.

However, I am deeply disturbed by thought of a society which demands euthanasia by anyone who is terminally ill. I don't want that at all but I definitely understand those who want to end their life instead of waiting for the natural end. I can see the psychology in that, not letting a disease win more or less. I couldn't beat the desease by treatment but I could beat it by not letting it kill me.

Pen Wilcock said...

I understand what you mean entirely, Elin, but I think it's important to get a realistic grasp of how people die. The advocates of euthanasia say of motor-neurone disease that death will come through suffocation, and this plants in people's mind the suggestion of a scenario such as you describe with your horrible asthma attack.
I have been present at the death of one person who died of motor neurone disease, and her last breaths were quiet and peaceful.
I have also been present when a person who had motor-neurone disease questioned the hospice doctor about her likely experience of death, and he was able to reassure her confidently that they would not let her choke.
As I've said in the blog post, it is possible to keep a person sedated through anything they do not wish to experience.
Advocates of euthanasia paint a picture that is persuasive in favour of their argument but does not match my own observation and experience.
I do feel we have work to do in ensuring that the day-to-day reality of chronic illness is better managed, because some chronically sick people have a miserable existence - but advocacy of euthanasia either does not address that, or at least does not admit to doing so.

Elin said...

I agree that people should be helped to be able to cope with dying if that is their will and helped in any way they can. I don't say that I would kill myself for sure but I would consider it. Perhaps fighting would be an option then but my general opinion as it is now and as it has been most of my life is that I would probably want to skip the last part of waiting for death.

My mother got a massive stroke and died in hospital about a week later. They did what they could to save her but then they said that it was useless and they stopped doing active things just giving her pain relief and waiting for her to stop breathing. It took 3 three days. I don't think it was painful or horrible and I do not wish that they had given her an injection instead of waiting for three days. Why? For the simple reason that I know that my mother always said that she couldn't understand why someone wouldn't want to fight to the end if they were ill. I don't feel that way myself and never have but I know she died the way she wanted to die. If it had been me I would have rather they had ended it though, I see no point in the struggle itself.

I do see a lot of problems with euthanasia. The two big ones are the impact on the people preforming the task of giving the injection, will they start questioning the action and feel bad about it? I also see a risk for a slippery slope and that euthanasia will be expected from people who are teminally ill. I don't want that. I am scared that euthanasia would make for a harder society and an idea of a dying person perhaps taking up too much resources and someone trying to tell them to kill themselves instead. Or, even worse, people actually being killed against their will. That is really scary but on a personal level I understand the choice 100%.

It is such a strong subject and there are so many many things to consider, I thank you for bringing it up.

Pen Wilcock said...

Yes - I find (as I see you do too) that what happens is two strands of issues emerge simultaneously; deep personal experience and big ethical concerns. These two both start expanding as one thinks about them until the whole thing ends up a bit mind-blowing.
Just to take up one point from your interesting and thoughtful comment here - I personally have never imagined myself 'fighting' a disease. I'm not sure how I would respond of I had a life-threatening condition, but it seems to me that making friends with one's body is in any eventuality the wisest course - and that can sometimes involve making friends with illness and pain. My hope is that, in spite of all the seriously scary stuff that comes with growing older, I can somehow manage to so make peace with my experience of this life that I can, by God's grace, transmute whatever comes my way into something holy, something beautiful. So far my track record in this respect is neither impressive nor improving! But it's still what I aspire to. xx