Category Archives: Education

Palace of Care – Three of a Kind

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Photo by Joshua J. Cotten on Unsplash

A severe deterioration had been expected within days of their arrival. A review of their medical records pointed towards a poor prognosis. There didn’t seem to be much time left. We tried our best to prepare the patients and their families for imminent death. A few days passed and none of them died. Maybe it was good control of their symptoms. It could’ve been the less stressful environment of the hospice inpatient unit. Was it access to fresh air? The better food? Flexible visiting hours and the ability for family members to stay overnight in relative comfort. Something kept them alive. None of them wanted to die. They all had too much to live for.

Different origin stories. Different walks of life. Different family relationships. Different husbands. Same hospice. Same time. Same staff looking after them.

Deteriorations happened and somehow they recovered. Again and again, they kept beating the odds. Staying alive in a mostly comfortable state. Their loved ones were along for the roller-coaster ride with seatbelts off.

Worsening symptoms required changes to medications. Their worsening overall condition led to discomfort and uncertainty. Was this the start of the final deterioration? Had their bodies decided which path to take? Which destination to go for? How much time was left?

We didn’t know the answers to the questions posed. We had no way of predicting what would happen. Instead, we would monitor their progress over time. Give them time to declare themselves. We would continue caring for them no matter what happened.

Palace of Care – Easter Face/Off

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Photo by Jerry Yu on Unsplash

Easter was about to arrive. At the last minute, I asked my wife and daughter if they had bunny ears I could borrow. They replied yes but they were unable to or me. Just like an Easter Egg a cunning plan was being hatched. Leftover Christmas decorations were examined and a pair of antlers were found. With the addition of cardboard, staples, and a hair tie, bunny ears had been produced out of thin air.

I wore the bunny headband for my whole workday. Anything for a laugh. The patients and their family members bore witness to my madness.

Later in the day, I met the son of one of our patients. He didn’t have clown makeup on and was of a serious demeanour. Facial tattoos adorned both cheeks. A proud member of one of New Zealand’s infamous gangs. We were both in the room because of the patient. Both of us trying to do the best for him. I tried my best not to stare at his facial tattoos. He tried his best not to stare at my bunny ears.

“Happy Easter,” were the first words I said to everyone in the room. Reading the logo tattooed on the son’s cheek I found out he was a member of team blue. I’d had a number of dealings with various members of this gang in the past. He stayed outside of the room but popped his head through the open window. I spoke to his father to see how I could help. Pain, nausea and hiccups were the main issues troubling my patient. He knew he was critically unwell and agreed with my plan to calm down his symptoms. His wife couldn’t keep a straight face as she tried not to laugh at my bunny ears. On that lighter note, I left the room.

A few minutes later our charge nurse had to go back in to talk to the patient’s son. He was smoking cigarettes on the balcony outside of our patient’s room. She asked him politely to stop smoking as it was a health and safety risk as our balcony is wooden and at risk of fire. He put out his cigarette without any comments or fuss. We have rules we have to comply with otherwise we’d be shut down.

We look after all sorts of people from all sorts of backgrounds, and all sorts of families. Even hardened criminals can be vulnerable when their loved ones are dying. They need to be treated with compassion and professional courtesy regardless of our own personal opinions. They want our best professional opinions when they meet us at work.

Palace of Care – Shorts 3

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Photo by Pars Sahin on Unsplash

Will another CT scan make things worse for her?

The scan itself wouldn’t make much difference. But the energy used to go out and get it would not be a good use of the precious time she has left. We only do tests if the results might change our treatment plan.

I wouldn’t recommend a scan as we already know what’s going on.

It would make it more real for us. We know what is happening, without the tests.

But she really wants it.

We can’t request scans ourselves. You’d be better off contacting the Oncologist, to ask his opinion.

How much time does she have left? Will she still be alive in two weeks’ time?

I don’t know. She might still be alive, or she might not last that long.

Is there anything else that we can do to treat her?

No, the Oncologist has tried all available options. If there was anything else available he would have done it already. I’m sorry.

We don’t want to be sitting and waiting. We want to do something.

Her time has become so precious.

Nod.

We will always be trying to do our best for your wife. And sometimes that might mean saying no to things you ask for.

Palace of Care – Staying Alive

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Photo by Philippe Leone on Unsplash

Doctor yesterday afternoon when my brother arrived Dad woke up. They were able to talk to each other overnight.

Wow. I was not expecting him to wake up again. I was very worried about him yesterday.

Yes, we were too. We’re happy that he has come back to us again.

That’s good. He was troubled by pain again overnight. I need to increase his pain relief again.

We’ve been keeping his mouth moist, and he has swallowed some coconut water. Is that okay?

That’s okay but make sure that he is fully alert, otherwise, he may choke.

Okay, see this is how we have been giving him the fluid.

Hmm, he is swallowing okay. You can keep going.

Good, we were worried that he was starving. We want to give him more fluids. Could we give him an IV line and glucose?

It’s best to give him fluids by mouth, any IV infusions would still be too much for his body to handle.

They’ll cause uncomfortable swelling?

Yes, that’s right, and it might make his breathing worse. Is there anything else you need?

Could you write a letter to support our relatives coming over?

Yes, I will write the letter after I prescribe the medications.

Thanks doctor.

You’re welcome. Let’s take things one day at a time. Please let us know if you need anything.

I think therefore I am? – What’s in a word?

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Today I was asked the difference between the terms Palliative Care and End of Life Care. End-of-life care is for the last days of life and can be considered the final kind of palliative care that people will receive. Whereas palliative care is for people in their last 12 months of life or possibly longer. A person may have palliative care needs at any time during this period. They might have symptom control issues needing assistance. Common physical issues are pain, nausea, breathlessness, and agitation but non-physical issues can cause just as much if not more morbidity.

Using the lens of Aotearoa New Zealand’s Te Whare Tapa Wha as well as Tinana/Physical we look at Hinengaro/Emotional, Wairua/Spiritual, and Whanau/Familial/Social. People may be suffering from problems on the non-physical sides of the house.

What is palliative care? Care is provided to patients in order to decrease suffering. To calm down symptoms affecting the whole person be they physical or non-physical. It is hard to divide people up into the four sides of the house as everything is interlinked within the same person. You can’t separate the mind from the body from the spirit from the community.

Fear of the unknown is what can occur when it comes to Hospice. People may have a certain idea of what hospice is. It might be a frightening thought for them, one they hope they will never have need of. Death is inevitable and reminds us that it will come to us no matter what station in life we have held in the past. What we do in the here and now is what is most important. Will there be a tomorrow at all? We don’t have all of the answers at all.

People in the communities we serve don’t know us well. Fear of the unknown is a real thing, that hampers access to care. How to break those through the fear barrier? Knowledge is power, empowerment to make your own decisions. To do what is right for you and your loved ones. While you are still well enough to make decisions we will check with you about what you would want to happen or not want to happen to yourself.

Guest Post – Rishika Iyer 5th Year Medical Student – Addressing the empathy in the room: a poem

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Of the words most used in medical school,
Empathy is number one.
Em-pa-thy, they recite from the dictionary. Diligently, we write it down.
From the German, einfühlung, or ‘in feeling’, noun:
‘the ability to understand another person’s feelings, experience, and so on’

And I wonder,
Why they fail to teach us of the Germans,
Who felt the need to combine ein with fühlung and give it meaning.
What 19th century experiences must have underpinned such a decision?
I wonder,
Who are these people that sense deeply, perceive freely?
Where can I find a dictionary of their stories?

Because in the end,
A ‘so on’ isn’t something we can rote learn.
It gathers cobwebs inside a brain that is unable to sit still.
Between tutorials and theatre lists and post-acute Ward rounds,
We forget that true empathy surpasses what we write down.

So I thank you,
From the bottom of a heart that’s still growing,
For bringing life to a phrase that German scholars gave meaning.
Once elusive, empathy runs through the very veins of this establishment,
And I create my own dictionary of stories that exemplify this.

Rishika joined our hospice team for the past five weeks. She generously wrote this poem reflecting on what she had learned during her time with us. Thank you Rishika, we look forward to reading more of your writing in the future.

Palace of Care – Dehumidifier

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Photo by Laårk Boshoff on Unsplash

We didn’t know what was keeping him going. He hadn’t eaten anything for ten days. No drinks for days. Somehow he was still producing urine. Where did it come from? His son speculated that he was drawing the water out of the room’s atmosphere. “Dad’s become a dehumidifier.”

He had outlived many doctors’ prognostication attempts, including my own. “Anyone else would’ve died a week ago. He’s not anyone else he’s stronger than most people.” Somehow he had stayed alive with his metastatic cancer for four years. He had received multiple treatments over the years. They had kept him alive, but the last three months had been a struggle. He had lost 20kg over the years of illness. 10kg had been lost in the past three months because of severe nausea.

The cancer was cruel as it melted his body away it took away his appetite. His once mighty frame was reduced to skin and bone. He still wasn’t used to his reflection, it had continued to change. Despite all of the weight loss, one thing he never lost was his sense of humour.

In life he had always done things in his way, at his own pace and it was no different in his death. The family maintained their long vigil, and he remained mostly asleep but responsive when he was awake. If our staff found evidence of his imminent death we would inform them. We also warned them that sometimes people don’t want anyone to be around at the point of death and that he might slip away when an opportunity presented itself.

He was kept calm and comfortable. His family were supported and our patient died three days later.

Palliative care for patients with Parkinson’s disease

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I often work in a palliative consultation service, and we are seeing more patients with chronic neurological conditions like Parkinson’s Disease. Parkinson’s disease is a progressive neurological disease that causes tremors (shaking), slowness of movement and stiffness. It can cause changes in facial expression so that people look expressionless. and changes in handwriting and speech too. We have to be careful not to prescribe medications that can make things worse, like for example, we currently give Metoclopramide (maxolon or pramin) for nausea but we need to avoid this medication in a person with Parkinson’s Disease.

Tanja Bahro and the team from the Southern Metropolitan Palliative Care Consortium in Melbourne Australia conducted a survey and found that palliative care clinicians wanted to know more about caring for patients with PD. Not being able to find a guide, they wrote their own! Please email Tanja for a copy tanja.bahro@smrpcc.org.au. They’ve had great feedback from users.

Tanja, tell us about your resource:

“Parkinson’s Disease – Issues for the Palliative Care Team” is a practical resource for people working in specialist palliative care, who are caring for people who are dying both with and from Parkinson’s Disease (PD). It was developed by our project officer Lee-Anne Henley with the great help of Dr Jim Howe, a very experienced neurologist in the area of progressive neurological conditions and palliative care, as well as Robert Wojnar, a pharmacist at Cabrini with a special interest in PD. The resource explains the main issues for people with PD at end-of-life and describes considerations and solutions. It also includes a practical care plan on which we have received some excellent feedback.

What gap did you see that lead you to develop it?

Because of the long trajectory, it is difficult for a health care team to know when people with PD should be referred to palliative care. A lot of PD patients also enter a nursing home and then at times lose contact with their neurologist. This can result in people not being referred to palliative care when appropriate and missing out on a multidisciplinary approach to care when the neurologist is no longer involved. Medication management can be difficult with PD patients, as some medications need to be continued to keep the patient comfortable but might also interact with medications commonly used for palliative care. We undertook a survey of palliative care staff and found that people wanted to know more, so we tried to find clinical guidelines or similar resources. When we couldn’t find anything we thought we’d better develop something ourselves!

How will it help patients and clinicians?

We hope to achieve greater awareness of appropriate referral to palliative care and we’re working on that. With the resource, we anticipate that palliative care clinicians will liaise more with the neurologist— they now have a simple and comprehensive guide to the main issues for people with PD and can therefore act quicker and prevent some of the pitfalls. Our next project is to adapt the resource for the residential aged care sector, but that’s more complex because we must take into account that the clinicians there might not have specialist palliative care knowledge.

How can people get the resource?

We want to make sure that we distribute the resource only to clinicians with experience in palliative care, so we haven’t put it on our website, but pc clinicians can just contact me on tanja.bahro@smrpcc.org.au and I’ll email it to them very quickly.

I think therefore I am? – On Death and Dying

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I virtually attended a Palliative Medicine conference over the past three days and have heard talks from a wide range of speakers. Included were a gastroenterologist and a haematologist both from specialties who are still unsure about which patients to refer to palliative care, and when to refer them.

It becomes a self-fulfilling prophecy if all the referrals we get are very late then we cannot do as much for the patients and their families. If the referral only arrives 72 hours before death or two weeks before death, does that mean palliative care is synonymous with end-of-life care? But that is not what we are trying to do in reality. Our services are happy to work alongside other specialties. A patient can be on the liver transplant waiting list and also receive palliative care from the local hospice. This is different to the USA where admission to the hospice programme means you cannot have ‘active’ treatments anymore. We have many patients who are still on their palliative chemotherapy/radiotherapy/immunotherapy and many other active treatments including haemodialysis. Even as the patient undergoes various treatments we are keen to help reduce suffering in its many forms, both physical and emotional, spiritual, and social.

How can we get this important message across? A patient referred to palliative care/hospice doesn’t mean that you have given up on them. One of my mentors Dr David Perez who worked in Medical Oncology would talk to his patients about coming to the point where there were no more active Oncology treatments available and the time had come for Active Palliative Care.

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I think therefore I am? – Colours

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Photo by Sharon Pittaway on Unsplash

Most people have a favourite. Something caught your eye when you were a kid. It might be the colour of your favourite toy. Or your favourite food. It might be the colours of your nation’s flag. Colours are abundant in our world, the different shades make the world more interesting.

People are of different skin colours too. Some of us are white. Some of us are Brown. Black. Yellow, Olive-skinned. Grey. Different but the same in many aspects. Various empires sent their colonists out into the bigger world. The locals were impacted and the trauma that was experienced can be passed down through the generations. A deep lack of trust was ingrained by the actions of colonists toward the natives. This distrust can be passed down the bloodline, leading to intergenerational trauma.

When you are in good health you can tolerate a lot more than when you are unwell. Your baseline fears and needs come to the surface under stress. The uncertainty of their situation can leave a person terrified. The fears from the past can come back, no matter how strong a person had been in suppressing them.

Past traumas can be triggered unintentionally and people may want to avoid situations when they feel at their most vulnerable. People try to remain as independent as possible, and they may struggle in their non-acceptance of help. When you are weak and tired you may try to show your strength by pushing people away. Not being able to toilet or shower oneself may be one such situation. Requiring assistance means the loss of privacy and dignity. Having to be naked in the presence of others is a huge line to cross. Having to admit, “I need help. I am vulnerable.” A nightmare situation for anyone, having to be fully exposed. Add to that the inter-generational fear triggered by someone who resembles your ancestors’ oppressors and pre-existing suffering can be amplified.

Colours can affect us in many ways. Red light means Stop. Green for Go. What does amber/orange mean? Speed up or slow down? Everything becomes a blur of colour. The centre cannot hold, as a human being accelerates towards the finish line. The colour in their eyes faded down to a sparkless stare into space. The light of the person dims as they prepare to leave this plane of existence. Off they go to parts unknown, never to return again.