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UNDERSTANDING END OF LIFE, PALLIATIVE CARE AND A REALISTIC INSIGHT INTO PALLIATIVE CARE              AND END OF LIFE SUFFERING

Beverley Young

(Retired Palliative Care Nurse Specialist –20 years’ experience –Post Graduate Qualifications in Palliative Care)

I completed my Nursing Registration with a Diploma of Applied Science (Nursing) in 1988 from the Northern Rivers College of Advanced Education, Lismore, (now Southern Cross University).  Following this, in early 1992,I completed my Bachelor’s Degree in Health Science (Nursing) from Armidale University, while in the Graduate Program at Lismore Base Hospital.  In June 1992 I commenced work as a Registered Nurse in Palliative Care at a dedicated and well-known “Hospice” (for the dying) in Sydney.

In 1995 I completed Post Graduate studies in Advanced Palliative Care at The University of Technology,Sydney.  During my employment at the well-known dedicated “Hospice” facility, I attained my accreditation as a Clinical Nurse Specialist in Palliative Care, and was employed there until July 2004.  During this time, I was also seconded to another Hospital in the capacity of Clinical Nurse Specialist to work alongside a Palliative Care Specialist.  Additionally, I served on the Community Palliative Care Team, as a Consultant.  In the last 4 years of my employment I was a Level 11 Palliative Care Supervisor.

Palliative Care:

Palliative Care is delivered in a range of different environments and these include:

•Within a dedicated “Hospice” environment

•Within a general hospital setting where there may be dedicated “palliative care” beds or a “palliative care” section of the hospital

•Within a “Home” environment (e.g. Hospice Services) although the “Home” option is limited due to palliative care resources

Through my observations and experience I wish to state that Palliative Care may not be delivered to the same standard that you find in a “dedicated” Hospice environment. Standards vary because of insufficient training of doctors within a true palliative care setting.

Palliative care aims for excellence at all times but, despite this, the best efforts to achieve this continue to fail a small percentage of cases and people can and do suffer an horrendous end of life experience with many expressing the wish for their suffering “to be over”. There is also, sadly, a monumental “fail” at times, when medical professions choose not to acknowledge a patient’s terminal state, and continue to subject people to invasive procedures.

I have so many experiences to recount. For the purpose of this “post” I will discuss one example of how Palliative Care is not able to help with all suffering at the end stage of life. Similar experiences demonstrate why I advocate for exceptional palliative care –uniform and standardised –regardless of the palliative care environment in which it is delivered.  My experiences also demonstrate why I fully support Voluntary Assisted Dying Legislation for those who seek this option to end suffering and die a peaceful death.

A Chinese gentleman, with advanced bowel cancer, came to the Hospice in which I worked, for “respite” care –he was referred to us from a large “general hospital”. The “plan” was “build up his condition in preparation for skin grafts to his buttocks”.  A very unusual site, I thought, at the time, with “pressure sores” being the only thing witnessed in that area.

I arranged a resident doctor and a physio to come and assess the gentleman at the time of admission, to minimise any discomfort through “excess handling”. The gentleman had arrived at our Hospice by ambulance stretcher –the gentleman’s frail wife visibly concerned, beside him. As the ambulance-man wheeled the gentleman passed the desk, the absolutely unmistakeable odour of gangrene filled the air. The physio and I exchanged glances –dreading what we would find when we settled the gentleman into bed.

Once in bed, I gently rolled the gentleman towards me, whilst the physio looked at his bottom. The pure horror on the physio’s face was enough to tell me everything I needed to know. This gentleman’s buttock area was permeated with sinus –countless small tunnels, if you like, out of which faecal matter oozed. Several perimeters had necrosed –meaning tissue in this area was dying. The tissue dies because of the advanced state of the disease–in this gentleman’s case, advanced bowel cancer,and there is nothing that can be done. You cannot regenerate that –it is dead tissue. The fact that this man had been referred for his buttocks to receive a skin graft was truly alarming.

There was no way that the referring individuals from the hospital from which the gentleman came,could NOT have known he was close to dying. He came from a major large hospital in Sydney. He was debilitated. He was skeletal. He was jaundiced. He was “end stage” and his “colour” was indicative of having major liver metastases.

This man’s family were in China. He had not seen his mother or three brothers for nearly 10 years. The plan was for them to come in 6 weeks.

Somehow, I had to convey the urgency to this gentleman’s wife, the urgency to get them here sooner –without saying that her husband was dying. As a Palliative Care Nurse Specialist,we were not allowed to ever discuss a patient’s anticipated life expectancy with the patient –that was always for the doctor.  Quickly picking up on my suggestion that the family might come much sooner, the gentleman’s wife was, quite correctly, distraught.  Never, at any stage, had she ever suspected, nor ever been told of her husband’s true situation.

This gentleman sadly passed away, just short of one week later without the opportunity to see his mother or brothers.

As mentioned, I have experienced first-hand, the horror of many “end of life situations”that could not be alleviated by even the best of palliative care. To suggest that palliative care, even at its best, can prevent extreme suffering in everyone, or negate the need for the option of voluntary assisted dying legislation, (should the individual choose this option),is to be inexperienced in the specialty of palliative care and to not respect the choice of the individual

Maine Voices: In name of mercy, Maine Death With Dignity belongs on ballot

The measure [to include this in a referendum] would offer the dying an option to minimize needless suffering.

The original opinion piece title was more provocative – Rev Ellison has said he called it: “”Thou Shall Not Torture the Dying.”

Here are some quotes from Rev Ellison. I do urge viewers of this post to read the full article at the link below.

 “As a person of faith, ordained minister and professor of Christian ethics for more than three decades, I’m committed to seeking peace, justice and compassion in all things.”

“My religious tradition calls on the faithful to help reduce suffering in the world, including suffering at the bedside of those dying. For many, palliative care offers the comfort and support necessary to ease their way to a good death, but alas, palliative care is not always adequate to the task.”

“For others in the dying process, despite receiving the best palliative care, they find themselves ready to die, but unable to die. Too often they face a torturous ending.  Denying the dying person the freedom to end unnecessary, meaningless suffering is far from merciful; rather, it’s torturous.   Torture in any form is morally wrong.”

• “As a person of faith, I hope and pray that Maine will join California, Colorado, Hawaii, Montana, Oregon, Vermont, Washington and the District of Columbia and make assisted dying legally available, allowing adults of sound mind to make their own value choices at the end of life. Doing so, I suggest, is a faithful, principled, and compassionate way to affirm the dignity and well-being of the living and the dying.”

Rev Dr Marvin Ellison, a Willard S. Bass Professor Emeritus of Christian Ethics at Bangor Theological Seminary, USA, is a scholar-activist and ordained Presbyterian minister. 

 Photo supplied by Rev Ellison

Please read the full article ……

Brad Hazzard
Minister for Health

Dear Mr Hazzard

Congratulations on your appointment as Health Minister for NSW.  It is encouraging that in the Daily Telegraph 6.2.2017 you are reported as recognising that more needs to be done for health matters in regional NSW.

You also stated that: “……often people depart this life in hospital…….”.  This is certainly true, as NSW Prof Ken Hillman has noted: “Up to 70% of people now die in acute hospitals, surrounded by well meaning strangers, inflicting all that medicine has to offer; often resulting in a painful, distressing and degrading end to their life.”

Research indicates that in fact 70 to 80% of terminal patients would prefer to die at home.  To enable this, adequately trained people are needed, plus the funding directed towards this service.  I imagine it could well be ‘cost effective’ compared with dying in an Intensive Care Unit or similar?  Ref: http://www.abc.net.au/news/2015-10-25/hundreds-access-program-of-end-of-life-care-at-home/6883162

Another issue relating to the terminally ill also attracts a similar level of 70 to 80% public support in NSW.  That of assisted dying choice for the terminally or hopelessly ill who are facing futile suffering.

A cross party group of NSW MPs is currently working on a draft Bill to enable this choice, and I respectfully urge you to please have positive input into this much needed legislation, with the aim of ensuring that the final draft is such that you as Minister for Health could publicly support and vote to pass it.  It does need to have a balance enabling access for the patients who wish to use it, and safeguards to protect from possible abuse.

There is now extensive data from other jurisdictions that proves this balance is possible.
– A wide ranging, in depth, Victorian Parliament Inquiry into End of Life Choices made 49 recommendations including improvements to palliative care AND that the Victorian Parliament enact legislation to enable medically assisted dying choice
– A significant number of Australian nursing groups (who are at the ‘coalface’ of dying), support having this legal choice.
– The whole of Canada has assisted dying choice, albeit under limited conditions, following a Supreme Court decision and a number of inquiries that all found in favour of this choice. Notably, this new law has the endorsement of the Canadian Medical Association.
– Legislation in Oregon USA has been operating successfully for nearly 20 years, as indicated by the Annual Reports and other studies.

Other points supporting legislation include –
– There are many instances of horrific futile suffering endured by a dying patient where even the best palliative care cannot adequately control the symptoms.
– Palliative Care own data (PCOC) shows 1 in 6 patients in the terminal phase of their terminal illness report moderate to severe distress from pain.
– Access to assisted dying choice is palliative in its own right. Patients given access frequently live longer and have a better end quality of life than those who do not request assistance.
– Overwhelming public support, including perhaps to your surprise, a majority of Christians.
– Having this choice puts the patient first.
– It provides a compassionate and logical alternative to the present ‘grey area’ of terminal sedation.

I would greatly appreciate the opportunity to discuss this issue face to face with you and provide additional information in support of assisted dying choice.
Yours sincerely

Ian Wood
National Coordinator
Christians Supporting Choice for Voluntary Euthanasia
Villa 1, Hampton Mews
4 Wills Place
Mittagong  NSW  2575
Website www.Christiansforve.org.au

Copy of this email also sent by post to Premier Berejiklian.