Palace of Care – You Are All On My Side

Photo by Sorin Gheorghita on Unsplash

The hospital palliative care nurse called me to refer a lady in her late 80s who prior to admission had lived independently until she started falling over. It was minor slips with minor injuries, then moderate trips with moderate injuries. In the past week she had a major fall, resulting in life-threatening injuries. Hospital tests showed that her chemical balances were all out, that a lot of bones and organ tissue had been replaced by cancer. The reason that she had lost her physical balance was that the cancer had invaded her spine, crushing the spinal cord and rendering her lower body weaker and then paralysed. She could no longer move her legs, but unfortunately could feel pain, and in fact her legs had become hypersensitive to pain. The bundle of nerves that make up the spinal cord do not like being pushed on, and scream out in protest.

During her week in hospital she had almost died twice. Each time, somehow she had recovered. Each time she was left devastated that she had recovered. From being fully independent, she had become fully dependent, a situation that she found impossible to tolerate. She had some stern conversations with The Almighty, she was not happy with what he had chosen for her. Her beloved husband had died over 30 years ago and there wasn’t a day that she didn’t think about him. She wished to be at his side again.

She asked the nice hospital palliative care nurse about the assisted dying service that she had heard about. Printed information was provided which was read and digested, with some difficulty as the pain in her legs and bottom still bothered her despite the pain relief she was given. She thought that she would qualify for assisted dying, having met all of the eligibility criteria and still maintaining her decision making capacity. The palliative care nurse said that no-one in the hospital provided the service, but that a referral could be made to the Ministry of Health in order for them to assign a practitioner to her. A process that would usually take two to six weeks to complete. Her ward team made the referral to the national service.

When I received the phone call mid-morning it sounded to me like a lady who needed our help. Inadequately controlled pain and pressure areas were not being addressed properly. Someone who could benefit from our non-doctor or nurse team members as she was suffering on all sides of Te Whare Tapa Wha: Tinana – Physical, Hinengaro – Emotional, Wairua – Spiritual, Whanau – Familial/Social. This was a case of Total Pain of Total Suffering. Regardless of her wish to pursue assisted dying this was a lady who urgently needed hospice inpatient care. Our associate charge nurse agreed and we arranged for the lady to be transferred over the same afternoon.

Significant uncontrolled pain was identified on admission, as well as worsening pressure injuries to the skin of her bottom. Her stoical nature did not allow her to be troubled by nausea, but she did have it. She was in severe pain and we started strong pain relief agents to try to dampen it. All who met her were amazed at the lucidity of her thinking, her determined nature shone through the gloom of pain. Her quick witty sense of humour had persisted despite all recent attempts to destroy it. We all enjoyed getting to know her. She had strategically placed her Assisted Dying printouts on her bedside table for all of us to see. She was keen to talk about it further.

I pointed to her papers and asked her directly what had made her interested to pursue an assisted death. She talked about her lucid sharp mind trapped within a broken, body that was full of pain and her deep disappointment at being close to death and surviving twice in the past week.

I openly discussed our stance when it came to assisted dying, that we would be happy to host her assisted death on our premises. In the meantime we would treat her like any other hospice patient, and would try our best to make her comfortable. I also warned her that the assisted dying assessment process usually took a number of weeks, and given her precarious health condition, that it was possible that her natural death might occur before she could have an assisted death. She really didn’t mind how she went, as long as she died quickly, was her answer. She made me promise that no life prolonging treatments would be given to her, as she did not want her existence extended. I promised to abide by her wishes, and that we would always try to make her more comfortable.

The next day, I tried to convince her to bake me a chocolate cake, but she didn’t fancy my chances, in her current state. I talked about my own baking and an apple cake that I had made. In an effort to show off more, I had first made the butter myself. She said that she had been quite the baker when she was well, and I found out that New Zealand’s famous Pavlova was her signature cake. Although it was her mighty trifle that was the star of her dessert showcase. I did my best to extract her secret recipe but all that she would give away was it involved soaking various ingredients in copious quantities of sherry. The most important ingredient was jelly, or else it couldn’t be called a proper trifle, she insisted. Before I left her for the day I asked if there was anything else that I could do for her. She said that she had run out of facial moisturiser, she asked if there was anything that I could give her. Through my yellow face mask I told her that I would make her some fresh butter, and yes, it was an attempt to butter her up. She kicked me out of her room after I winked at her.

Within days she had already charmed half of our staff, and was well on her way with the other half. We worked on her pain and made progress, but it kept on worsening. The Ministry of Health had arranged for an attending medical practitioner to start her assessment process, and last Tuesday I introduced the visiting doctor to our patient, before they chatted.

The next morning I talked to her daughter who was stranded overseas. She was worried that her mother was reluctant to take pain relief because she didn’t want to endanger her chances of having an assisted death. She thought that her mum had the idea that taking more pain relief would lead to her living longer, and also that it would endanger her decision making capacity. I talked it over with our patient and explained that I was confident that I could control her pain better. I promised that I would try to decrease her pain whilst trying to maintain her clarity of thought as much as possible. The medication changes could make her more fatigued in general, less able to eat and increase her risk of natural deterioration. She said she didn’t mind being sleepy as she had always had trouble sleeping at night, especially over the past fortnight.

Medications were increased, her pains were well controlled and she slept much better that night. We had a brief chat the next morning and she shared with me that she felt that our whole team was really on her side, and that she felt well looked after by us. I said we would get her through this, whether she had a natural death or an assisted death, that we would be there for her and support her no matter what happened. She said she felt safe with us, and that she trusted us.

Over the next three days she deteriorated rapidly and was kept comfortable. She died peacefully on Sunday. This was two days before the Ministry of Health had arranged for their second assessor to see her, and likely weeks before she could’ve accessed an assisted death.

Rest in Peace Dear Lady. Thank you for all of the shared laughs. Wink.

1 thought on “Palace of Care – You Are All On My Side

  1. What a fantastic share – supporting the patient all the way through

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    Tina McCafferty
    Chief Executive
    Phone: +64 9 6400285
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