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.
I had been on call for the hospital when the little old Chinese man had first presented to hospital. They had discussed his situation, a large stomach cancer which kept on bleeding, and that his Hb level was only 41. My opinion was that he was dying from recurrent bleeding that could not be stopped. My advice was that the hospital team have a discussion with the patient and family about the fact that his bleeding would be a life-ending event, that further transfusions would not be able to keep up with the amount of bleeding that was happening.
Some of my advice was taken, but not everything. It was as if the hospital doctors had spoken to me in a second language, one that didn’t lead to mutual understanding. They did end up having a conversation with the patient and his daughter about no further transfusions, but this was after transfusing one more unit of blood. The hospital doctor could speak Mandarin with the patient and family. He told them that the last unit of blood was an, “especially strong unit of blood, and would give him an extra boost.” Following this final transfusion the patient was sent across to the hospice.
I love my food, and some (mainly my wife, staff members, and the World Health Organisation) would say I love my food too much. So when I hear about crimes committed against food it really annoys me. Hospital food usually has a bad reputation. Mass produced food in general is usually not as good. The recent trend in New Zealand hospitals is for food to be manufactured in a central location and then for all the food to be transported to all of the hospitals. Though this may make economic sense, it is makes no gastronomic sense at all.
This goes against treatment of patients as human beings. Patients are served unappealing material that may have had a natural origin at some point in its life time. It takes a lot of skill to transform random bits of plants and animals into things that resemble plastic in the way it looks and tastes. Patients are in hospitals because they are unwell, and it does no-one any favours when the food they are served makes them feel even sicker.
A plate of fish and mashed potatoes was an example that my cousin told me about. The fish was dry and rubbery, with all nutritional content having been consigned to the pages of history long ago. The mashed potato had given up its moral integrity. Having once lived in a hole in the ground, the potato had been harshly dragged into the light. Flayed whilst still alive, and then subjected to a death by a thousand cuts. Turned into tiny molecules of potato, smashed into uniform shapes. Then dried out along with billions of similarly shaped friends, and repackaged. Add water to make instant mash potato. Instant it may have become, but potato it was in name only.
As I start to return to my usual role, I wanted to take some time to reflect on the last couple of weeks and acknowledge and thank the vast number of people in Canterbury DHB who have poured countless hours in to supporting the patients, families and staff of Rosewood Rest Home and Hospital.
I volunteered to be redeployed in the COVID-19 hospital ward at Rosewood. I worked 60 hours over seven shifts as a palliative care clinical nurse specialist.
It is still hard to describe the situation we were faced with. Firstly, we changed into scrubs in the clean area, then got into our personal protective equipment (PPE) in the transition zone (under the watchful eye of our fabulous PPE champions). Then it was brief introductions to those who would be our colleagues for the day (registered nurses, enrolled nurses, student nurses, theatre nurses, paramedics, dental nurses and caregivers, all redeployed from other services) and straight into the ward. From there, it was all hands on deck to keep up with the never ending tasks of caring for elderly, sick and fragile patients, whom you’ve never met before.
Meanwhile your brain clouds over until your lungs adjust to breathing through a mask, becoming increasingly breathless with every shouted conversation to an unidentifiable colleague. Patients’ symptoms would flare up, with little to no predictability or recognised pattern (yet) alongside other underlying health issues presenting their own symptoms. Diarrhoea, back pain, dry cough, delirium, the occasional temperature, lungs filling up fast with thick mucous and decreasing oxygen saturation that betrayed the underlying seriousness of their illness. For some, positioning became a matter of life or death.
Everyone worked tirelessly in the built up heat of PPE to keep up with the heavy nursing tasks required, while still taking time to fuss over the personal touches for each patient, like finding the right station on the radio or singing happy birthday complete with a little cake and candles. Gloved hands struggled to make the touch-screen of the electronic drug chart or smart-phone work, or to type the right letters into patients’ electronic records for the GP to read remotely.
Fortunately, after the initial onset of acute symptoms, most patients appeared largely untroubled by the roller-coaster of symptoms that lingered as days turned into weeks. It seems to be the one positive in all this, on their bad days they would just go quiet, refuse food and fluids, tuck up in bed and sleep peacefully. But this is when we worried about them the most.
The most heart-breaking of all of this though will always be the inability to unite families with their loved ones in their time of need. I cannot imagine the worry and fear this must cause, despite our best efforts to keep in touch by phone or video call. Dying and death are so steeped in our social rituals and traditions. Not being able to be there with them, and not being able to accompany other family members during funerals and the grieving process will, I’m sure, leave many lasting scars. Families just hoped we could get their loved ones through the illness until they were able to be with them again, come what may. We tried, we really did.
Meanwhile, on the other side of the glass door separating us from the outside world, we could see many others working equally as hard. Deliveries arrived; a constant stream of clean linen, more scrubs, boxes of PPE, equipment, food for patients, food for staff, medical supplies, gifts for Rosewood from neighbours and industry colleagues, all of which we were using as fast as they arrived. More staff arrived, ready for induction in to their new roles as receptionists, cleaners, administrators, or to receive training on the use of PPE in preparation for work within the clinical areas. Beyond that, there were security guards who stood alone on the footpath in 10-hour shifts.
Unseen but greatly appreciated, was the Canterbury DHB Emergency Coordination Centre (ECC) team that coordinated us all and devoted themselves to ensuring the smallest details were accounted for. I cannot begin to imagine the mammoth task of staffing and operating an aged care facility in the throes of a pandemic, and all from afar. But what I can say is that I’m deeply grateful to each and every person who sorted their piece of this giant puzzle and kept us all safe. The residents at Rosewood may be elderly with many suffering advanced, long-standing illnesses that render most unable to communicate, but they still delight in their favourite music or their favourite meal. They could still let me know where to stick my thermometer when they were tired of being poked and prodded. They were once soldiers, teachers, mothers and athletes and they still matter deeply to their families, to the Rosewood staff and to those of us who only met them briefly. I will be forever grateful to, and proud of, all those who honoured these people by going above and beyond the call of duty to do everything possible to care for them.
I am also humbled by the continuation of care for those of us who stepped in and out of Rosewood. I received phone calls and multiple emails from ECC staff preparing me as best as possible for the role (although in truth, it was more intense and heart-breaking than I could have possibly imagined), as well as phone calls and emails from occupational health now that I have finished my work there; making sure I am ok and that I am clear about the services available to me and what is required in the weeks ahead as I return to my usual role. Having unrestricted access to a full range of PPE during my work, as well as health assessments and swabs on completion, has been a significant psychological support throughout, and has enabled me to feel confident about my safety at work. One less thing to worry about in this extraordinary set of circumstances. Thank you.
I would also like to acknowledge the often unsung heroes of our health system; the staff working in aged residential care. Without knowing anything about the residents when I arrived, it was still very obvious that these people were not just well cared for, but loved. The little messages left around the place signalling to others that ‘Bob’ likes fruit with his Weet-Bix but ‘Nancy’ hates mushy carrots, the smiling faces in photos on the wall of outings with staff. I know they were deeply distressed by having to leave their patients, heart-sick when hearing from afar about the devastation COVID-19 was wreaking on those they consider family, and completely lost when returning to a workplace so unrecognisable and with many missing faces. For sure we will have put things in all the wrong places and missed filling in a few forms, but we did our best to replicate their love and care of patients in their absence. The smiles from patients on their return told us they were greatly missed though.
No doubt it will take a long time for the Rosewood community to pick up the pieces and move forward. I hope we will all continue to offer them the support and resources they need.
With my most humble gratitude for all the mountains that have been moved by many in recent weeks,
Regional (South Island) Programme Facilitator – Palliative Care South Island Alliance Programme Office
It’s hard to overstate the impact of the novel Coronavirus on health systems around the world. It’s particularly poignant for palliative care workers, so familiar with dying, to imagine the loss and grief. We try to image what it could be like for health care workers at the front line. Soon we will not have to imagine, as we will be at the front line.
This article, written in 2010 about influenza by Dr Downar and Dr Seccareccia, is prescient.
Twitter as always is an invaluable source of dialogue on this issue. Try out this thread from @AmitAryaMD – you don’t need to be able to use Twitter to read it.
How are your teams and health care service preparing for the pandemic in Australia, New Zealand and elsewhere?
It’s election time again! Honestly, we have not had a new Prime Minister for ages in Australia. We sadly can’t have Jacinda Ardern, but there it is.
Dr Benjamin Thomas (@andiyarus) has been tweeting up a storm putting pressure on the powers-that-be and the powers-that-wannabe in advocating for #palliativecare patients in the upcoming election. He visited the @Palliverse to answer a few questions for us. Continue reading →
Interested in palliative care in hospitals? I certainly am. In my work as a palliative care consultant in the consultation service in an acute hospital, I see a LOT of unmet need, late referrals, and treatment being undertaken without good conversations about the patient’s goals and needs.
We at Palliverse are very keen to promote improvements at a systems level to improve access to palliative care in the acute setting.
On 17th October, Safer Care Victoria is holding a free webinar on palliative care in hospitals. Our host is Claudia Virdun, who has worked in palliative care within a clinical, project management or education position for over 18 years. Claudia has completed an Honours degree (Nursing), Masters degree in Advancing Professional Healthcare Practice and is currently a Phd Candidate with her research focusing on supporting system-level improvements for palliative care within the hospital setting.
Pre-reading for the webinar include Ms. Virdun’s review and meta-synthesis on what is important to patients and families in end of life care in hospitals.
The webinar takes place at 2PM on 17th October AEDT. For those outside of eastern Australia, here’s a time zone converter.
I have to confess I am a fan of the New Zealand health system from across the ditch. Sensible spending. strong palliative care health service connections… am I wrong Bro?
This article has not succeeded in reversing my bias in favour of New Zealand.
Palliative data nerds will no doubt recall this fascinating study in Scotland by Professor Clark et al. Published in Palliative Medicine, and quickly attaining the journal’s highest-ever Altmetrics score (1) , Clark showed that among 10,743 inpatients in 25 Scottish teaching and general hospitals on 31 March 2010, 3,098 (28.8%) patients died during the one-year follow-up period. The findings were replicated in 2013 with similar results.
The study by the fabulous Professor Merryn Gott et al showed that on the same date, the corresponding figure in New Zealand (including obstetrics) was about half at 14.5%. Patients at higher risk of dying were the elderly of over 80 years of age, Maori, those with cancer, those from socially disadvantaged backgrounds, and those admitted under medical specialties rather than surgical.
New Zealand seems to provide better end of life care outside the hospital setting, with stronger end-of-life care in the aged care setting. This has certainly been a focus for service development in Australia as well.
How would we rate in Australia I wonder?
I would love to hear from international colleagues
Delirium is a favourite topic of ours at Palliverse – it is experienced by many people with palliative care needs, including at the end of life, and is often distressing to the person, their loved ones and health professionals providing care. Despite this, it remains poorly recognised, underdiagnosed and poorly treated – not least because the evidence base is still growing.
They have suggested some Actions to Take on #WDD2017. I’ve listed them below & with some thoughts on how to take action.
Commit to using the term ‘delirium’
If you hear someone using terms like “agitated”, “restless”, “aggressive” or “pleasantly confused”, think – could this be delirium? I use the term delirium, document it and make sure it’s communicated in the medical record and letters. Recognising and diagnosing delirium allows us to educate patients and their loved ones, as well as providing the best delirium care possible.
Screen your patients for delirium
People at risk of delirium, who should be screened, include those with serious illness, those aged over 65 years and those with underlying cognitive impairment. This includes many of the people cared for by palliative care services! The diagnosis of delirium may be missed, delayed or misdiagnosed without screening, as signs may be subtle (especially in hypoactive delirium). There are multiple simple bedside screening tests for delirium, and although not all these have been validated in the specialist palliative care setting, they are still useful. The 4AT is a freely available screening tool that can be administered by any health professional and does not require training.
Listen to patient and family stories about the experience of delirium
What may seem “pleasantly confused” to staff members can be very distressing for the delirious person and their families. Being agitated, aggressive or “just not themselves” can be distressing for patients and families to witness – it is important to acknowledge these emotions and provide education about delirium. (See “Michael’s Story: the fear on his face was palpable” for a wife’s experience of her husband’s undiagnosed delirium.)
Engage your leadership in a discussion of delirium
If the above isn’t enough to convince your leadership to take note, delirium also increases the risk of health care complications like falls, pressure injuries, prolonged length of stay, and mortality. For those in Australia, World Delirium Day is a great time to introduce your leadership to the recently released Delirium Clinical Care Standard (which we’ve covered here before).
Educate health professionals about delirium
Delirium does not “belong” to just one group of health professionals or one specialty. It’s common, especially in palliative care, and important for us all to know about it. Some of my favourite educational resources are freely available at the Scottish Delirium Association, plus this 5-minute video from UK-based Delirium Champion Dr MS Krishnan. (I’ve shared this before but it’s worth sharing again!)
As a final bid to raise awareness, you can participate in a #WDD2017 Thunderclap via your Facebook, Twitter or Tumblr account, to alert your friends and followers to the importance of delirium.
Delirium is a syndrome associated with a sudden change in a person’s mental function that interferes with their thinking and awareness. It is a common problem that confronts many patients, families and clinicians in the palliative care setting. Delirium usually develops as a result of a serious medical condition, which can often be found and treated. However, the symptoms of delirium – such as fluctuating confusion, reduced attention, disturbed sleep-wake cycle, and/or hallucinations – can be very distressing for everyone involved, and may persist for many days to weeks.
Medications – including antipsychotics such as haloperidol and risperidone – are often used to manage the symptoms of delirium. But do they actually work?
To join in on the conversation, you will need to sign up for a Twitter account
To find out more about how to participate, check out our guides here and here
What? We will be discussing the following topics during the journal club
Topic 1: Why was the study conducted? Are the study questions / aims relevant to you and/or your work?
Topic 2: How was the study conducted? What did you like about the study methodology? Would you have done anything differently?
Topic 3: What were the main findings from the study? Were you surprised by any of the study results?
Topic 4: Has this study changed the way you think about delirium in the palliative care setting? Why and why not? What’s next?
If you would like more information, or are having trouble accessing the paper, please feel free to contact us via Twitter (@Dr_Chi_Li or @palliverse) or by email (firstname.lastname@example.org or email@example.com).
We hope you can join us for a great discussion about this important study!