Palace of Care – What’s in a name?

Photo by Tim Mossholder on Unsplash

She was transferred from hospital into hospice at the end of her life and only had days left to live. End-stage cancer had taken complete control of her body. We were handed over that it was important that we respect her wishes especially when it came to calling her by her proper name. It was a name that she had to fight for, that she had won for herself, but at great cost.

Not everyone understood her wishes. When her relatives came to see her they brought old family photos, and called her by a different name. She looked different in the photos, much younger, and dressed in different clothes. We were all young once. She was becoming less responsive as each day passed and her family talked about someone who sounded different to the patient that we had only a short time to get to know.

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Bedside Lessons – 10. Freedom to Choose

Photo by Deleece Cook on Unsplash

Working in the community palliative care team I don’t meet in person most of the patients that are under our team’s care. I often have to provide advice for people that I have never met and have to count on my staff members’ assessments as the basis of knowledge of each patient. This is how our specialist support is provided from a distance, this allows me to have about 380 patients under my consultant remote control supervision at any time. Often I will provide advice which will be conveyed to the patient and their family doctor to be actioned.

This is the story of someone I never actually met but whom I provided advice on, an elderly Jewish lady who was a Holocaust survivor. I never found out which concentration camp she had lived through but somehow she had stayed alive when many had not. When she was young all control of her life had been taken away from her. Separated from her family whom she never saw again, made to endure hellish conditions, tattooed and emotionally scarred for life, she some how made it through her ordeal. She moved to New Zealand, married a local man, had children and grand-children and a rich and rewarding family life.

Recently her health had taken a turn for the worse and she was diagnosed with metastatic cancer with spread to her brain, causing headaches, and seizures. Despite having had radiotherapy treatment and high dose corticosteroid treatment her symptoms worsened. She was still clear in her thinking but was at risk of this deteriorating soon.

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I think therefore I am? – Clarification

Photo by Jeremy Bezanger on Unsplash

The following are my own personal professional views and do not represent those of my employer or of Palliverse in general.

I’m not interested in debating the pros and cons of assisted dying, everyone is entitled to their own opinions. In Nov 2020, 82% of eligible voters voted in the referendum, 65% of the voters supported the End Of Life Choice Act 2019. Aotearoa/NZ clearly stated it’s opinion last year, and in two days’ time it will become law.

I do not want my patients to be caught in the middle of two warring ideologies.

I am not here to argue, I am here to listen to my patient, I am here to learn from them. They are the expert when it comes to what they are going through and their suffering is defined by them, not by me.

I think that we in Hospice/Palliative Care need to build a bridge and get over ourselves. Our focus should be on our patients, not on ourselves.

Please treat patients with respect, they weren’t born yesterday, but they might die tomorrow.

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I think therefore I am? – It’s so funny how we don’t talk anymore

St Joseph’s Hospice was founded in 1967 by Cicely Saunders in order to help cancer patients for whom medicine had nothing else to offer. Often these patients would suffer from the effects of their illnesses and died in miserable circumstances which were distressing to both patients and their families. Over the next decades hospice/palliative care services developed all over the world, and practitioners pride themselves on being patient-centric. Hospice/palliative care staff value their communication skills, and listen actively in order to find out what their patients need.  They try to offer bespoke care customised to the individual patient and their family.

In New Zealand on 07 November 2021 the End of Life Choice Act 2019 will be enacted which will mean that people with less than six months to live who have intolerable suffering and fulfil the criteria can legally access assisted dying services. New Zealand Hospice and Palliative Care organisations around the country have put forward a viewpoint that they are not supportive of assisted dying, and have largely not engaged with the subject at all despite it becoming legal and available in five days’ time.

What if NZ Hospice/Palliative Care was to try to empathise with someone with the opposing point of view. What if it was to put itself into the shoes of a person considering accessing assisted dying services? What might such a person have to say to them?

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Bedside Lessons – 4. The Father

Photo by Tim Mossholder on Unsplash

The old Chinese man was admitted with uncontrolled pain and breathing distress. His wife and son doted upon him and were worried about him as he had been rapidly worsening over the past weeks. He had previously had fluid from around his lung drained in hospital the other month, which had helped his breathing. His symptoms were controlled quickly but he still felt exhausted.

Even speaking to him in his native Mandarin Chinese it was difficult to tell what he really wanted. He appeared to know that things were worsening. It was just before New Zealand’s general election, and the End of Life Choice Act 2019 was being considered for enactment via National Referendum. He told me that he had already cast his vote and was in support of having the option of assisted dying. His son quickly told him that even if it was voted in that it could not be accessed until another 12 months.

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Survey – clinical trials in specialist palliative care

If you are a nurse, doctor or allied health professional in a specialist palliative care service please consider contributing to the survey below. It does not take long.

“Attitudes of Palliative Care Practitioners Towards Enrolling Patients in Clinical Trials

We would appreciate your participation in this survey as a health care professional who provides care to patients in palliative care settings.
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A reflection on voluntary assisted dying and conscientious objection

Dying sculture

[Image by rmac8oppo from pixabay]

[The following essay by Dr Adrian Dabscheck, an experienced palliative care physician in Melbourne, explores the evolution of our society’s views towards death and reflects on the role of palliative care and voluntary assisted dying in this context – Chi]

During a recent period of enforced rest, I had time to reflect on my attitude to the recently enacted voluntary assisted dying legislation in Victoria and consider my response.I will detail my reaction to the Act and why I have chosen to become a so-called conscientious objector.

In his essay Western Attitudes Toward Death,French historian Philippe Ariès illustrates the evolution of our attitudes to death.

Initially, and for millennia, there had been a general resignation to the destiny of our species for which he used the phrase, Et moriemur, and we shall all die. This was replaced in the twelfth century by the more modern concept of the importance of one’s self, and he used the phrase, la mort de soi, one’s own death.  Continue reading

Death and digital media seminar Melbourne 26th April 17:00

The Centre for Palliative Care is hosting what will be a thought-provoking session on the intersection of death and digital media. As someone who is periodically startled by Facebook mentions of people who have died, I am looking forward to this.

“The focus of this presentation will be to outline some of the key issues surrounding death in the digital age. This will include a critical overview of how people mourn, commemorate and interact with the dead through digital media.

The presenters will briefly map the historical and shifting landscape of digital death by considering a range of social, commercial and institutional responses to technological innovations. Discussion will centre around multiple digital platforms through a number of case studies drawn from Australia, North America and Europe.

Through these case studies they will offer fresh insight and analysis into emerging practices through which digital technologies are used to mourn, commemorate and interact with the dead.

You won’t want to miss this 21st century overview of death and social media.”

For more information email centre.palliativecare@svha.org.au

http://www.centreforpallcare.org/events/32/hot-topic-death-and-digital-media

Cheers, Sonia

 

An open letter to Victorians on #PalliativeCare #VAD #euthanasia

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PC clinician open letter Final

immunotherapy and the miracle cure

Another insightful article from Dr Ranjana Sriastava, a Melbourne medical oncologist and writer, encapsulates my recent experience as a palliative care doctor on the frontline between hope and dying in a cancer centre.
The anticipated miracles of cancers dissolving before our eyes are common enough for patients and doctors to push on with expensive, sometimes self-funded treatment (at great cost) in preference to the needed preparation by patient and family for dying. For a patient and family perspective, skip down to the comments after the article and read HugiHugo’s description of his wife’s last months while undergoing treatment.

A patient with widely disseminated and aggressive melanoma having immunotherapy grunted at me in frustration last month. “Listen,” he said, “they are all high-fiving over there in the oncology clinic. Why do you want to talk about end of life stuff? It’s really confusing.” Pretty appalled at the idea that we were giving the patient mixed messages, I was fortunate to be able to do a joint consultation with the patient’s medical oncologist to nut out our different perceptions. Unfortunately for the patient, his oncologist confirmed that the treatment was very unlikely to be a miracle and most patients in his situation would live less than a year. To say that the patient was shocked was an understatement. Had he not been referred to my team for symptom management, this conversation would have happened later – or never.

Evidence is emerging that outcomes of immunotherapy in patients with poor performance status are very unimpressive. Patients with poor performance status had been excluded from initial trials.
Where does the deficit in our communication of hope lie? Is it in the delivery by the doctor? The reception by the patient? A bit of both? How can we accurately respond to the portrayal of immunotherapy in the media and social media as a miracle cure, and allow for the possibility of benefit without downplaying the risks?

Sonia