Tag Archives: end of life

Palace of Care – You Are All On My Side

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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 Hospital tests showed that her chemical balances were all out, that a lot of bones and organ tissue had been replaced by cancer.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.

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Guest Post – Naomi’s Notes – Making Friends

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Photo by Jason Pofahl on Unsplash

The sound of the skipping rope whirring as it hit the ground meant their father was up.  He used to skip every day before he went to work.  

He taught his children resilience, to never give up when learning something new no matter how difficult it was. “You just gotta make friends with it”, he used to say.  

He loved his children and would try and spoil them when he could.   

He fancied himself as a mechanic and would often diagnose the car trouble as needing new spark plugs.  When asked if he had fixed the car he nodded and said  it didn’t need the key to start it, you just had to stand at the front step and clap your hands and it would come.

He was of that generation where you didn’t tell your kids you loved them but you showed them.  When his children told him they loved him it was met by an embarrassed silence.

The removal of his gall bladder heralded the start of his decline. He became increasingly ill and grumpy and as the days moved on he became less communicative.  He was always very direct in his communication. When his children spoke to him on the phone he never said hello or goodbye. He said their name and at the end just hung up.

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I think therefore I am? – Final Human(?) Interaction

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Photo by Lewis Roberts on Unsplash

With palliative care/hospice patients and their fragile health status, there is a chance that every time you see them might be the last time they ever have a meaningful connection with a fellow human being. Things can change in an instant, people can lose consciousness or clarity. Keeping this in mind, try to make each interaction as pleasant an encounter as you can for the both of you. The following tells of an unpleasant distressing encounter.

I was asked to see an unwell Oncology patient, who was in a lot of pain, and possibly about to die. There was a language barrier in that he did not speak English, thus an interpreter was organised to facilitate communication. That was the idea anyway, what actually happened was different.

The man in bed looked fragile, he had trouble communicating with his family, as he was lapsing in and out of consciousness. The interpreter arrived, a young man, who looked nervous. He stood at the end of the bed and didn’t greet the patient or his family members. The patient was being prepared for a scan and might need to head downstairs at a moment’s notice, so time was of the essence.

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I think therefore I am? – We told you so

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Photo by Alex Shute on Unsplash

Too young to be dying , only 32, with two toddlers 3 and 1 years old, she hadn’t even been a smoker. She had only had back pain, and on investigation last year, they found that she had metastatic lung cancer.

She came in with terrible pain, hadn’t been able to sleep for most of the week. Her partner, the father of the children, looked just as exhausted. Looking after her and the two tiny children. A tragic situation.

Pain difficult to control, breathing in a distressed fashion. She could barely leave her bed in the last two days.

Usual rule of thumb applied, if changing over months, months left to live, weeks – weeks, days-days, hours-hours.

Over the past four days, a change noted each single day. We estimated that she only had days to short weeks left to live.

We knew that she was supposed to go to Oncology, to have chemotherapy, but we thought she was too unwell.

We rang the Oncologist to discuss this, that we thought that she was dying, with only days to weeks left to live. We recommended that she not have chemotherapy, as we were concerned it would cause her more harm, than any potential benefit.

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Palace of Care – Best Laid Plans

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Photo by Pedro Miranda on Unsplash

Advance Care Planning (ACP) is recommended for everyone. It allows people to convey what is important to them. It can guide loved ones and health professionals as to what your wishes are in the case of you becoming incapable of expressing yourself. Such a situation is possible for anyone and thus it is recommended to be completed whilst you are well. Although it can be hard to imagine how you would feel or act in the event of severe illness or disability. ACP allows people to take some control of the end of their lives. This is what I want, this is want I don’t want. This is who I want around me. This is how I define what is quality of life for me. This is where I draw the line. It can be a confronting and difficult exercise to complete with your loved ones but it maybe a crucial method to communicate what you really want.

My patient had been diagnosed with MND (Motor Neurone Disease) over a year ago, and after attending the second clinic appointment they had introduced him to ACP. He read through the booklet with his wife, and it appealed to his organised nature. He always had a monthly, yearly and five-yearly plan in action. The doctor had said that most people would die of MND 18 months after diagnosis. This can mean time is running out, and this is not aided by diagnostic delay. All other illness have to be excluded before the diagnosis of MND is confirmed, for most people it is still a death sentence.

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I think therefore I am? – Dropped

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Photo by Rod Long on Unsplash

I feel so lost, I feel so alone, aren’t I good enough for you? What did I do wrong? Why did you change so suddenly? I thought you’d always be there for me. I thought you’d have my back.

Many different people may be felt to be the other, this can have a racial basis, or be on a religious basis. People are labeled as other to justify treating them badly, and this is an unjust situation in this day and age. What other justifications are there for bad treatment of our fellow humans?

Palliative care patients may face stigmatisation for being closer to dying than most people. Oh well they’re going to die anyway, so why should we bother taking care of them? Just shove them in the corner and pull the curtain around them, and forget about them. Out of sight and out of mind. Not my problem mate. Who cares they’re dying anyway, not worth me expending any effort on them. I beg to differ, dying people deserve even more respect, as they are about to leave our planet, off to somewhere else, destination unknown. What will happen next? I don’t know.

It hurts to be rejected, to be pushed away, sometimes literally pushed away. I don’t want anything to do with you. Please leave, bad enough when you are trying to find a date, but when you are at the end of your life, how much more hurtful could that feel?

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Palace of Care – PI – Palliative Investigator

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She was one of our community patients, a lady in her early forties who had been deteriorating over the past week. We were able to control her physical symptoms well but there was a deep underlying sadness deep inside. She was able to accept that she was dying, that she would be leaving behind her 18 year old daughter and her husband. That was not the cause of her upset, our counsellor went to see her at home to see if she could find out what was going on.

What was causing our patient so much anguish? She was well supported by her husband and daughter, and other family members were helping too but as our patient became less conscious her agitation and distress worsened. Was it an end of life delirium or was there something more going on? Her husband said that she was still looking for Mary.

Mary? Who is Mary?

Our daughter.

But your daughter is not called Mary.

Our older daughter.

Oh we didn’t know you had another daughter.

She was stillborn when we had her 20 years ago. We were young and didn’t have enough money to properly bury her. We only had a few hours with her before they took her away. We never found out where she was buried. We looked for the first two years but our English wasn’t as good back then, we had just moved over from the Islands. We never found her, but we’ve always missed her. Especially my wife.

There was a mystery to be solved, I had to find out where baby Mary was buried, with only her full name and date of death. I had no idea how to start the search, so I asked around my colleagues. Thanks to everyone who suggested that I contact the local council. A quick search of their website found a section where you can search for burial locations online yourself. This did not yield any results, but led me to another section of the website that allowed me to send a query email.

A few days later a real human answered, and suggested that I email someone else. Two days later I was sent a reply with a picture of a map of the cemetery with a highlighted area within which the baby had been buried. I printed out the map and our counsellor rushed out to deliver the information package to the couple. Time was of the essence as our patient was deteriorating rapidly and was in danger of losing consciousness and clarity.

Two days later our patient died peacefully at home with her gathered family, her distress had settled down once she was told that Mary had been found. The bereaved husband’s were red and swollen, but he smiled when he told us that his wife knew where to find their long-lost baby and could pick her up on their way to heaven.

Guest Post – Naomi’s Notes – Appreciation

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Photo by Aude-Andre Saturnio on Unsplash

They were a big Samoan family who supported their mother’s decision to not undergo dialysis for her kidneys. She had no appetite for her favourite foods and the level of care was entering into an unknown realm.   In the distant past the caregiver had done some volunteer work for Hospice and thought this might be the answer to the problem.  

A family meeting was called and Hospice intervention was discussed.  The siblings were unanimous in their decision.  No Hospice, they viewed it as a betrayal and a failure on their part that their mother would be under the care of strangers instead of within her own family.  The siblings were having difficulty accepting the stage that their mother was at.   

Christmas came and she was very ill, she tried to make an effort to enjoy the day for her children.  Her grandchildren carried her outside into the Marquee for Christmas dinner. 

She didn’t want to spoil the day for her children.  They took her back to bed after a couple of hours.   She was too exhausted to sit up any longer.

Two days later she was in hospital, unable to communicate.  She sat and stared into space.  In the morning she woke up and pleaded to go home.  

Without consulting anyone her caregiver made the decision to request palliative care through Hospice.  By the time the discharge from hospital was completed, the hospital bed had already been delivered to her home.  Pain relief had been organised to ensure there was no breakthrough pain.

The family  had been standing alone with care of their mother and initially viewed Hospice as a  “us or them” situation. The siblings  quickly realised it was more  of a “we are on the same team” situation with a wonderful wrap around service.

The experienced nurses provided kind compassionate loving care. The family wanted  the best care for their mother and thanks to Hospice they got it.

Palace of Care – Smiley

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Photo by Jacob Vizek on Unsplash

I had finally completed my examinations and could start my specialist training. I had been drawn to both Medical Oncology and Palliative Medicine from a relatively young age and I could try working in each speciality for six months before deciding which one I wanted to pursue in the long-term.

One morning during my six months working in Medical Oncology I was in clinic with an Oncologist who I considered to be my mentor. Standard practice was for me to see the patient first, then present the case to my mentor, who would then come and see the patient.

A big friendly smile in the form of a slim 26 year old man walked in with his pregnant partner of similar age. They were accompanied by his cousin who was in his 40s. Smiley’s story was a sad one and had begun eight weeks prior to his clinic appointment. Life was good, he had a steady income from a job he enjoyed. In the weekends he loved playing rugby in the local team. He and his partner had been together for five years and were going to take the next step. Baby was on the way, and was due in five months’ time. Everything was going well until it wasn’t.

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Palace of Care – Race Against Time

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Photo by Shirly Niv Marton on Unsplash

I gently knocked on the door and then poked my head around the corner. I paused briefly before walking in and saw him sitting there holding his wife’s hand. He bent down and talked gently into her ear. They had only been married for 62 years, and had been together as a couple much longer. She had looked after him well according to his daughter, he had always been treated like a king. In recent years Dementia had meant that he had needed more care than ever. His queen kept him in line but as her health deteriorated she could not keep up with him.

She had lived with her daughter, son-in-law and had practically raised their children. The grandchildren were emotionally close to her and had spent six to eight weeks with her over the Christmas break before heading back to their overseas-based lives. Since her cancer diagnosis seven months ago, she had been cared for by her youngest daughter. She had to keep a close eye on her husband, as he was a flight risk. At times he didn’t even recognise her as she had recently lost a lot of weight. He would ask, “Who is the nice old lady?” With a few prompts he could be reorientated to the love of his life.

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