Two online PEPA workshops for General Practitioners – 23 July 2022

PEPA have two workshops to advertise in your regions. Eventbrite is open for registrations.

Name of workshop: Palliative Care in General Practice

Day and date of workshop: Saturday 23rd July, 10.00am – 12.00pm

Venue: Online

Register at this link: click here

This workshop is for General Practitioners based in Victoria (Australia) who care for people with a life-limiting illness. Practice Nurses are also welcome to attend.

Topics

• Recognising patients who need palliative care

• Communicating about end of life issues

• Voluntary assisted dying in Victoria

• Assessing and managing common symptoms

• Advance care planning

Facilitators:

Dr Rowan Hearn – Clinical Director Palliative Medicine, Calvary Health Care Bethlehem

Dr Rupert Strasser is a palliative care specialist and geriatrician, with Calvary Health Care Bethlehem. He is passionate about providing excellent clinical care for all. Rupert’s clinical interest includes palliative care for neurodegenerative disease.

PEPA is an accredited educator with RACGP (workshops are eligible for category 2 CPD points)

Date: Saturday 23rd July 2022

Time: 10am – 12pm

Online – a WebEx link and guidelines to access will be provided prior to the workshop date.

Workshop Pre-requisite:

To maximise learning PEPA offers 6 online GP learning modules. These modules have been developed by palliative care experts and reviewed by clinicians with extensive palliative care experience. They can be accessed by setting up an account at the PEPA Palliative Care Education and Training Collaborative: https://palliativecareeducation.com.au/

PEPA is an accredited educator with RACGP. Workshops are eligible for Category 2 CPD points

Inquiries:

PEPA Administration – E: pepa@svha.org.au

Margarita Makoutonina, Calvary Health Care Bethlehem

M: 0425 774 195

E: Margarita.Makoutonina@calvarycare.org.au

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Palace of Care – Straight Up

Photo by Brett Jordan on Unsplash

I felt it as soon as I arrived in this hospice. The wairua (spirit) felt good, and I started laughing. This place is lovely, the staff are so nice here Doc.

Were you scared of coming in?

Nah, I had heard good things about you fullas. And it was all true, you guys make me feel comfortable.

What did they tell you in hospital?

The doctor was straight up, told me what was going on. That it was bad cancer, that there was nothing else that could be done. No bullshitting like some of the other doctors.

Hmmm?

I went to the clinic and the doctor told me that there is nothing else that can be done. Then he talked about a possible treatment. I’m not sure if it was me that was confused or the doctor. I just want people to be honest with me. I’m not scared, I know I’m not well. We’ve lost a lot of whanau (family) in the past. I know what is happening, I’m dying. Can you be straight up and honest with me?

Sure. How are you really feeling?

A bit sore, I think I need the extra pain relief. Hey Doc, thanks for listening to me.

No worries, please tell us when you are not comfortable.

Palace of Care – A New Dawn

Photo by Fred Baum on Unsplash

I received an email from someone wanting to undergo an assisted death.

I replied with general advice that was available online on the New Zealand government’s assisted dying website.

The person replied outlining their situation. They had been approved for an assisted death by the national service. Their residential care facility which had been home for the past four months would not allow assisted dying to occur on its premises. Their local hospice had made it clear that they would not be an option.

I explained that we had initially planned to offer our venue for people in our catchment area, but would consider cases from elsewhere. I promised to consult my team, and we agreed that we would be able to provide a venue. An onsite meeting and tour of our facilities was arranged, scheduled for a time when the patient’s family would be available. This would be the first time that we would meet a patient accessing this service, which made us feel nervous.

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Palace of Care – What’s in a word?

Photo by Davide Zacchello on Unsplash

It was his second admission. He had been beautifully cared for by his family over many months, but the last week had been terrible. He was agitated, restless, and did not know what to do with himself. His wife wanted him to come back into hospice for end of life care.

On arrival he was semi-conscious, agitated and not able to talk clearly. His body was so unwell that his mind was no longer able to be lucid. Although he tried so hard to be there, it looked as if he was in-between two worlds. His family reported that he had seen dead ancestors.

I didn’t want there to be any surprises: I spoke in a quiet voice and tried to be as clear to them as possible, using simple English.

He is so unwell, so exhausted. He is dying.

I purposefully used the word dying at least five times during the 15 minutes of my visit.

When someone is dying everything inside can become all messed up, like he’s in a storm. He doesn’t know which way is up or down, and it might be really scary for him.

End of life delirium/terminal restlessness.

When someone is dying, they become less clear in their thinking, and sleepier. That is Nature or a higher power’s [palms open being raised towards the ceiling] way of protecting the dying person from having to have the full 3D/HD experience of dying.

He could see that his own distress was causing distress to his family, which caused him further distress.

I will change his medications to relax him. We’re going to calm it all down, and we are going to get him through this. We’re going to get you all through this.

I was caught off guard when he suddenly opened his eyes and reached out to shake my hand in both of his. He thanked me for what I had done for him.

Nek minnit – [I was being hugged and I hugged him back.]

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.

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Guest Post – Naomi’s Notes – Making Friends

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

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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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

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

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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