Palliative Care Nurse Specialist Beverley Young shares this very moving example of why palliative care can never adequately control all end of life suffering, and why the additional option of Voluntary Assisted Dying is needed. Just why this dying gentleman was moved from a major Sydney hospital for a skin graft is impossible to understand!
Ian Wood. Posted with permission.
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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