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September Meeting Report

It was good to see two new members at our meeting this morning: Susan and Kevin, both from Northland and both receiving radiotherapy here in Auckland. 

Dr Kim Gear was unable to attend but we discussed the dental situation at some length. This is an ongoing project of ours with the next step to hear from Kim about her "survivorship" hospital and my intention to follow up a suggestion that I contact the Dental Association. 

We talked about the election year promises and what we would like to see come out of new health spending. Yes, more funding, a more patient-centred service and a shorter waiting time for surgery. One of our members has a fractured jaw but might have to wait four months for surgery. 

But our two most substantial topics were end of life choices and the Australian version of the patient book published by the Swallows Charity in the UK.

End of Life Choices

Dr Mary Panko, a lecturer at Unitec, is also the secretary of End of Life Choices, the new name for the Voluntary Euthanasia Society. They no longer like the word euthanasia and prefer to look at the subject of choice. There are two aspects to this. What advance care directives can we make legally? And, should the law be changed to allow assisted dying. (David Seymour has presented a bill to parliament.)

Mary reported the following statistics: 

  • 30,000 people die each year in New Zealand. 
  • 5 - 8% of these people have what we might call a "bad" death. That would be 550 people. 
  • 606 people committed suicide in the last 12 months. 10% of these people were over 65 - that amounts to over 60 people. 

How can we provide people with more choice at the end of life, choice for a peaceful death?

She emphasized that we must respect everyone's choices. Those who do not wish to have a choice at the end, those with a strong religious belief, need to be utterly respected.  However,  many of us want some control over the way we die. You could argue that our wishes need to be respected too. She said she was largely in favour of David Seymour's bill (the only thing she agreed with him on). But many of the issues will need to be discussed if it goes ahead. 

David Seymour's End of Life Choice Bill 

http://www.legislation.govt.nz/bill/member/2017/0269/latest/DLM7285905.html

The following website summarizes his bill. 

 http://euthanasiadebate.org.nz/resources-2/end-of-life-choice-bill/

David Seymour’s End of Life Choice Bill proposes that any New Zealand citizen or permanent resident 18 years or older will be eligible for ‘assisted dying’ if he or she suffers from:
 

  • a terminal illness or other medical condition that is likely to end his or her life within 6 months; or
  • a grievous and irremediable medical condition; and
  • is in an advanced state of irreversible decline in capability;
  • experiences unbearable suffering that cannot be relieved in a manner that he or she considers tolerable; and
  • has the ability to understand the nature of assisted dying; and the consequences for him or her of assisted dying.

Ideas from other countries

One member pointed out that Oregon had a very successful law which allowed people to have medication at hand to take when they were ready. The majority, she said, did not take the medication but they could have it in their cupboard for when it was needed. There are many safeguards written into the legislation. Washington State and California have similar laws and Canada has carried out a thorough review of the ethics of assisted dying. 

Links here:

http://www.oregon.gov/oha/PH/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3265521/

Mary maintained that she did not like the idea of medications in the cupboard. However, there was so much discussion among the people in the group that we did not clarify this. 

What we can do now: Advanced Care Directives

Even without a change of law, there are many choices we can make in advance by writing an advance care directive. There is a more substantial list than merely Do Not Resuscitate. Mary said that a woman she knew tattooed her "rules" on her body: do not resuscitate, no antibiotics etc. She thought it was much more practical to write these conditions in a legal document.

Their document is called "Guide to Dying - Your Way". Here is an extract from their site. (They have drawn up a legal document which you can download for $15. You can order a hard copy for $25.) 

When thinking about dying, it’s easy to forget that you may be in a situation where you are unable to speak for yourself, unable to communicate what you do and don’t want – for example, after a head injury, stroke or heart attack – or you may be suffering from Alzheimer’s disease, dementia or other health issues that could alter your quality of life.

An Advance Directive (AD) is literally specifying what you do and don’t want, written down, witnessed and signed. Your Agent is the person you have chosen to speak for you if and when necessary. Someone who knows and understands you and is prepared to argue for what you want.

Your completed Advance Directive acts as an important guide for your Agent who will communicate your choices. This is extremely helpful for the medical team who may not be familiar with your case, but want to provide the best care possible. It is also very helpful for your family members who otherwise may not agree with one another as to the best course of action.

https://ves.org.nz/guide


A big thank you to Mary for talking to us. We really only scraped the surface of the issue. The discussion was lively and made it hard to keep up with the note-taking.

Mary talks to many schools and retrement homes. She is undaunted when she has the whole audience against her as she did a Muslim girls' school recently. It is her warmth and humanity that make a somewhat uncomfortable subject an affirmation of life and compassion rather than a focus on death. 

Readings from the Swallows Book

Thanks to Dr David Grayson we recorded four live readings from parts of this book. I read a passage on the need for psychological support by Julie McCrossin, while David Stevenson, Judy and Marlene read other parts. We added our voices to the chorus of people who want to support people affected by head and neck cancer. It's best to view this on Twitter. Our Twitter address is @HeadNeckNZ. 

 

 

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Comments

  • Can we add this to our resources tab.  It seems very important. 

  • Mary is trying to help people sort these thing out well in advance, I guess. I heard nothing about all this when Allen was fading. DNR is an option in dementia units but they sent him to hospital in an ambulance to have IV antibiotics during his second to last bout of pneumonia. The hospital people thought this was a bit ridiculous. He could barely swallow. During his final pneumonia attack, I was given the choice of having him sent to hospital again and I said no but would have liked to have been spared that decision. So, not many people in the field are familiar with what Mary is talking about - not yet.

  • When Fred was diagnosed I asked the social worker we saw only once about an advanced care directive.  His response was that we could see the GP for a "do not resuscitate" instruction.  What I had thought was that we could have a discussion about things that might occur and what we would do.

    But then that was the same person who said that Fred shouldn't be thinking about palliative care.

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