Dying with Dignity

Dr V. Jonathon Hartfield, a Wanganui Hospice doctor and an Anglican priest, believes we should put our energies into hospice services which encourage people to find a positive phase of life, even in their dying.
  • Euthanasia is not a personal decision totally insulated from other people's feelings and beliefs.
  • Voluntary euthanasia has the potential to blow families apart and exacerbate existing decisions.
  • Trust and confidence between doctor, nurse and patient will be lost when euthanasia is accepted by a society.
  • Good people will accept euthanasia in order to not be a burden to their families.
  • Bad people will use euthanasia for their own ends.
Transcript of a talk given at a Public Forum on Euthanasia held in Wanganui, April 23, 2003.

Compassion for a suffering and incurable person is what we all share - and both the Voluntary Euthanasia Society and the Hospice movement see a focus for their compassion in their hope that a persons dying will be with dignity.

Dignity is a slippery slope however, meaning different things to different people. In particular, to live and die with dignity means very different things to different cultures and ethnic groups - so dignity is going to be hard to legislate for. I note the proposed Death with Dignity Bill does not define dignity.

I think however that we can all say that the huddled dead on an Iraqi street have died without dignity. Conversely, to die in clean clothes with our hair one and our faces washed and a shave for those who feel that way; to die without anxiety or fear; to die with caring peple about us; to die with some sense that life has been worthwhile; to die at peace and with serenity; to die with all major discomfort soothed or eliminated - these things make for a god death.

I think all these ingredients to dying and moving on to death would be considered dying with dignity and uncontroversial in our society - and shared by all people of good will.

How we achieve this for everyone as well as other more subtle and deeper objectives concerning not only the body but the personality and spirit - how we achieve this dying and death with dignity is difficult sometimes.

Although I am purposely concentrating on the physical and the obviously medical, because my time is limited, I would not like you to think that emotional and spiritual factors are not important. All physical symptoms could be controlled, depression recognised and adequately treated, but the person is still totally miserable with far more complex spiritual pain.

Holistic approach
Elizabeth Kübler-Ross has alerted us to the Stages of Grief for patient and family. Shock, denial, anger, bargaining, sadness, and final acceptance not especially in that order, and sometimes several in the same day or week - but acceptance and hope for the future if appropriate to the person's belief - is the final achievement. Spiritual is harder to define than emotional, but we all have spiritual lives.

Not so long ago we had a man in his 50's in Hospice with cancer of the lung. He had wanted to be at home but his family were near exhausted, so he came in for respite and some help with physical symptoms.

One afternoon the nurse on duty rang me. Sam (not his name) wants to know about heaven. Well I couldn't fax through a prescription about that so I got out of my gardening togs and went up to see him. It was true he wanted to talk about heaven - not a lot - but he and his wife and I talked a little and he had all he wanted within the hour. So I said a prayer with them and went home.

In the next few days several of his anxieties about his relatives and affairs melted away. We were able to get him home and he died about 10 days later with his dog and his family around him, in his bed by a sunny window with a view of his garden.

So our approach in hospice work is a holistic one requiring a multidisciplinary approach. One misconception about us is that we only look after cancer patients, but we are increasingly seeing the need in other diseases, for example end stage heart failure and chronic obstructive respiratory disease - smoker's chest.

Also I think another wrong view is that we are only for the last stages. We are not always utilised early enough. The last year is infinitely better than the last week. We believe that we can support a person and allow them to die with dignity without needing to terminate their life artificially. We believe that the last days and months can be a time of maturing and growth for all concerned, despite the difficulties of that time - often because of the difficulties of that time.

I believe a good Hospice Service makes euthanasia and any law change unnecessary. A Hospice and a euthanasia service can of course co-exist, but I believe the disadvantages of euthanasia will impact upon society to the detriment of hospice care and I am not talking only about the impact on medical resources. I think euthanasia will have a bad influence on ordinary people in society.

Do we have the individual right to choose our own death?
Being human is being part of a society and there are many individual wishes in life that I have to put aside for others - I can't even choose which side of the road to drive. Two year-olds can be so difficult because they are all individual rights and needs and are only just learning about co-operating with other people.

Euthanasia does involve a lot of other people - health professionals, civil servants and most importantly the patient's family. Do these all agree to their loved ones dying in this way? A grieving family where some didn't agree, some didn't whole-heartedly agree and are having second thoughts and some feel guilt, is leaving the family with a time bomb in its hands - and some families never get over it.

Euthanasia is not a personal decision totally insulated from other people's feelings and beliefs. I believe the hospice movement's support of a natural death, with help for relatives and friends before and after that time, is the right way to continue. It has the potential to unite families and bring people together. Voluntary euthanasia has the potential to blow families apart and exacerbate existing divisions.

Here are some of my reasons:

In Hospice or palliative care we give people choices - let them take part in their own care. It is part of giving them dignity - parts of their life are out of control and becoming more so, so we affirm what they can do. The Hospice movement, both here and worldwide, is against euthanasia - so that is one choice we do not give people.

It does appear that when a good hospice service is available, and is utilised, then the desire for euthanasia declines. Dr Derek Doyle, for 30 years in palliative care in Edinburgh the AIDs capital of Europe, wrote this year [2003],

"I have never had a request from a patient for euthanasia, though many have said they considered it before receiving palliative care. I have had many, many relatives ask for euthanasia, illegal as it is in my country, offering me substantial financial inducements."
The Hospice Service has to be good and universally available and utilised - and this is a worry in New Zealand. What are our Government's intentions? We now receive many patients into our hospice building direct from Wanganui Hospital. In the hospital treatment is free and the hospital is 100% subsidised by Government. It is a 10 minute drive to Hospice.

The same patient, 10 minutes later, continues to receive free treatment in the hospice, but the Government now only pays 50% of the cost. The other 50% is made up by volunteers and some staff working for less than their due, and voluntary contributions from the public. It is not an arrangement which makes improvement and expansion easy, especially as some useful drugs are very expensive.

Will a voluntary euthanasia service be fully funded or 50% funded like hospice - and will it have staff and resources that would otherwise be used in the hospice service?

So we in hospice make a limitation to people's choices, but I believe that it will not be detrimental if we develop our palliative care services not only to help people's physical needs, but their spiritual and emotional ones as well.

There is at present a trust between caregiver and patient - between patient and doctor. That trust is supported by several things; that we will be honest with each other; that I [the doctor] will do all I can for the good of the patient and not do harm; and that I [the doctor] will not prescribe unnecessary or futile treatment.

One of the founding images in the Dutch euthanasia movement was the unconscious, and never again to be conscious, patient in an intensive care unit with drips going, tubes coming out, a respirator on, and relatives waiting out the passage. An undignified death and a lot of futile unnecessary treatment. Doctors entranced with their technology and power. And euthanasia was a reaction to that. Yet ironically, the new Dutch legislation has doctors at every turn, giving permission, doing it, and, even on the committee after, saying it was legal.

Trust and honesty allows people to have choices about their treatment

A patient with cancer of the lung often develops pneumonia - does he want maybe a little more life and so would like antibiotics - or would he see this as the time to die through a natural process? If the latter, nothing is given to cure the infection, though any pain or discomfort from the pneumonia is palliated. There is still treatment but it does not cure the infection.

Different people and different circumstances make for different choices. There is a valuable trust that we will do the best for the patient, and a trust that we are not going to use inappropriate technology - futile treatments.

I think that trust will break down in some people with euthanasia about. Sick people are very vulnerable, can get a little paranoid, get muddled. If they know some doctors will perform euthanasia - in a perhaps muddled state - they may think, "Is this tablet to help me to sleep tonight, or to finish me off?" I think trust and confidence will be lost between doctor, nurse and patient when euthanasia is accepted by a society.

The bill to be debated is one for voluntary euthanasia - the patient's choice to ask for death [and] possibly get it.

How are we to be certain it is voluntary and there are no mistakes made?
First of all, we know of those people who don't like to be a bother. Words we have all heard so often - "I'm getting a bit of a burden for my family, I'd be better out of the way." True, that person may be hard work for the family but, despite the occasional cross moment, the family and staff really find it a privilege to look after Nana and it helps if they can get some respite from time to time.

But how many people will request euthanasia because they feel they ought to, not because they want to? How many will request euthanasia for their families' sake and not their own? If the law is passed, how many of some of our best people - best because they are unselfish and think of others - will die illegally? It is voluntary not volunteer euthanasia, but it may be difficult at times to separate them.

That could happen in the best of households, but what could happen in the not-so-best? The subtle hints that Mum would be better out of the way. Far-fetched? I'm not so sure. There is a lot of good in people, sometimes an astounding amount - the daughter lovingly, sacrificially caring for her aged Dad who sexually assaulted her throughout her childhood - but there is a bad side to humanity as well.

I have heard children arguing over the patient's bed over the assets soon to become available - and I well remember an oldish man who came to us for symptom control. He was quite ill but rallied when his symptoms improved. Ten days later, when he was ready to go home, we found his children had sold his flat without telling even him. So we had to find a place in a residential home.

Some people want others out of the way.

How are we to protect the vulnerable?
I note that in Holland, 20 percent - 1 in 5 - were killed without the patient's permission. That doesn't say much for free choice and patient autonomy - the fundamental reason for the Death With Dignity Bill.

In the statistics at the back of Lesley Martin's book "To Die Like a Dog" it records (page 234) that in 1995, 913 people had termination of life without express request (a little better than 1990 when it was 976). How can we even contemplate a change of law here until we know how to make euthanasia voluntary?

One person dying against their will is too much, let alone 913. Ironically, I seem now to be the one asking for more patient autonomy.

I'll finish with one or two very practical medical matters:
  • It looks as if doctors will have to do it. All our training and work, all our getting up at night to emergencies, is to preserve life. The New Zealand Medical Association is against the bill. will there be many willing to actually take life away? I don't know. Possibly after the first kill it becomes easier.

  • Depressed people, and people with a low mood, often feel like suicide, so will there be safeguards against euthanasia for depression? But depression is notoriously difficult to diagnose in the terminally ill, and low mood can rise with support - it is a Kübler-Ross stage. And where will the psychiatrists come from? We are short already. It may take several consultations to be certain that there is no treatable depression.

  • Will the end always be so dignified? An intravenous injection, Thiopentone, to put to sleep and then a drug to paralyse the muscles so breathing stops? I would guess this is the best way and the most dignified. The bill does not specify the means
But a couple of years ago on a Texan death row it took 45 minutes to get the cannula into a vein in a fit man, and many sick people have bad and difficult veins, and I would suggest most doctors - who are not putting needles in veins several times a day - I would suggest most doctors will have a significant number of failures to get the cannula securely in.

Second year house surgeons and anaesthetists are of course the experts in vein cannulisation, but would patients be willing to go to hospital for this, or would those hospital doctors be willing to attend homes to euthanise? I doubt both scenarios.

I think my three biggest worries are good people accepting voluntary euthanasia for other people, and bad people using it for their own ends, which will lead to a growing mistrust of a doctor or nurse's good intentions.

Personally I don't believe in killing anyone.

The doctor/patient, nurse/patient relationship is vitally important at the end of life and I believe that we should put our energies into hospice services which encourage people to find a positive phase of life, even in their dying.