What went wrong doctor? We went out for coffee just that morning. He was okay when I left him. The next day he was raving mad.
The afternoon he arrived when he talked to us, we thought he was joking when he said he thought people were keeping things from him. Later in the night he became confused. The next morning he was agitated. The urine test showed that he had an infection and we started antibiotics. Since then he’s become more unwell with his heart failure and lung disease. We think he’s dying. He’s been very distressed and we need to calm him down.
I’ve told him off because of some of the things he’s been saying.
He can’t help himself. His body has become too unwell and that has made his mind confused. It’s not him saying those things, it’s the illness. If he knew what had been going on he would hate it. We need to calm things down for him, he exhausted but he can’t relax enough to fall asleep. We want to make him more comfortable.
Is he going to recover from this?
No, I don’t think so. It will get worse. We’re not going to hold back when it comes to controlling his symptoms. He will likely become more sleepy if we can make him more relaxed.
Okay, we need to go out and arrange things for the next stage. Can you keep him alive until we come back?
I’m not sure if we can do that but we will make him comfortable no matter what happens.
She stooped as she kissed him on his forehead. “See you soon darling, you keep an eye on everyone while we are out.”
Our patient who had been more comfortable after we had changed his medications was not as well today. I had heard he had fallen over the weekend. Falls are usually bad news for our patients. The risk of falls increases as people become weaker and more tired. The body is unable to maintain all kinds of balance, not only physical but emotional, spiritual and social. Everything can start to fall apart.
I couldn’t understand what he was saying today. It wasn’t a language issue. He was dozing off as I spoke to him. His replies were slow and they did not make sense. He had some twitching in his arm and leg muscles, suggestive of his analgesia being too high. At times his arms would jerk upwards without any warning. He looked otherwise comfortable.
I wanted to control his pain as quickly as possible thus we increased his doses aggressively. The aim was to control his symptoms earlier, so we could send him home quickly. I had to bring his medication doses down. I hoped this deterioration would be reversible.
I would have to see what happened over the next days..
Harsh life stuff happened and they had to part. Too many angry words exchanged when under the influence had driven them apart. It had taken him a while to realise that and by then it was too late to reconcile.
Instead, a friendship developed as they continued to parent and co-grandparent, together but at a distance. They were still a family but they no longer lived under just one roof.
With earnest intentions they made it work throughout the years. He had always been strong and active. Determined to leave his mark on the world. To grow good young people into good citizens was his life’s purpose both professionally and at home.
The quality of the family relationship was something he was proud of, and when he needed them the most, they moved into his home. As he felt weaker and more tired they were there for him. His children and his ex came back to care for him. The next generation came to visit as well. He was proud of them all, happy they had pursued university education. Most of them had completed degrees or were well into their studies.
It was confusing for his children. Over the past weeks, he had needed to sleep more. He spent more and more time in bed. The trusted family doctor thought it was due to the illness in his digestive system. Something that shouldn’t have been there having grown in a painful and bloody manner. It had sapped his strength and drained away his previously abundant energy.
He had always been good for his age. When he was young he was tall for his age. When he was older he was strong for his age. Now he felt his age. All seven decades of his life had caught up with him over the past fortnight. He was still a big man but he had been scarily losing weight.
His mind started playing tricks with him. It was like he had turned up for Maths class with only his Geography equipment. Everything didn’t fit, he felt like he didn’t belong there. When was he? Even that was becoming less clear.
“What day is it? Why are they wanting me to leave? Have I done something wrong? It’s my house. You can’t take me out of my own home. What are you going to do with me? I don’t like the way you are looking at me. Leave me alone. Go away. I need to be at school. I need to be in charge.”
We were confused by the discharge letter. Our patient had been transferred from the hospital after a two-week admission. During the admission, the Oncology treatments had been stopped. On discharge, it appeared that the medications had been restarted. The Oncologist’s plan was unclear. On the second day, the patient developed a new abdominal pain. The pain was so severe that the patient felt they were ready to die. We changed their pain relief and also tried to cover the shortness of breath. By the afternoon the patient was more comfortable and able to sleep. The family had received a phone call asking for the patient to return to the hospital for further treatment. This surprised the family and our hospice team as the patient had barely been in the inpatient unit for 24 hours, and the hospital asked them to return. We called Oncology to find out what was going on. They wanted to give radiotherapy treatment to the patient’s back, for pain relief. We said we would see how the patient was the next morning as we were unsure if they’d be well enough to return to the hospital.
It was the second admission for our patient and it was going to be his last one.
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 admission he was only 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 was seeing ancestors that had died previously.
I didn’t mince words and tried to be as clear to them as possible. No surprises!
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.
TITLE: Development of a core outcome set for effectiveness trials of interventions to prevent and/or treat delirium in palliative care (Del-COrS)
We are currently looking for volunteers including: patients, family members, carers, healthcare professionals and researchers with experience of delirium in palliative care.
Participants would complete two online surveys to establish their views on the outcomes that are important to include in future studies of interventions to prevent or to treat delirium in palliative care. We will subsequently invite participants to a meeting to discuss the findings and vote on outcomes they consider important.
Our goal is to develop international consensus on a core outcome set for research studies of treatments within a palliative care setting to prevent, and/or treat delirium.
Researchers look at the effects of potential treatments on patients by measuring an ‘outcome’. For example, in a study of how well a new delirium treatment works in a palliative care setting, an ‘outcome’ might be: whether a person hurt themselves because of delirium.
When a set of main outcomes has been agreed for a health condition, it’s called a ‘core outcome set’. This would allow all studies of delirium in palliative care to be compared and combined.
Please contact Dr Anna Bryans (Research Team Member) at email@example.com if you are interested in participating and pass on this information to anyone who may wish to take part.
ANZSPM has received the following request from Dr AnnMarie Hosie, Post-doctoral Research Fellow, IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, University of Technology Sydney
MEDICAL PRACTICE IN THE TREATMENT OF DELIRIUM
You are invited to participate in a brief (10 minute) online survey about medical practice in the treatment of delirium.
The survey is for medical professionals working clinically in Australia.
Your time and insights towards better understanding of clinical practice for this common and serious medical problem will be greatly appreciated.
Chaired by @Meera_Agar – the lead author of the seminal paper examining the role of antipsychotics in the management of delirium symptoms in the palliative care setting, which was published in JAMA Internal Medicine earlier this year – the session will feature presentations from Professor Agar, as well as:
Dr Simon Allan, palliative care physician, Director of Palliative Care at Arohanui Hospice in New Zealand and the current President of the Australasian Chapter of Palliative Medicine, the Royal Australasian College of Physicians,
Dr Chris Moran, geriatrician from Alfred Health and research fellow at Monash University, and
Dr Justin Dwyer, psychiatrist and Medical Director of the Psychosocial Cancer Care service at St Vincent’s Hospital, Melbourne.
After the presentations, a panel discussion involving the speakers will offer the audience plenty of opportunities to further explore this hot topic in palliative care.
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 robs dying people of their autonomy, dignity and last conversations with loved ones, at a time when every moment is precious.
Symptoms are highly distressing to experience and watch. Confusion, incoherent communication, poor attention, agitation, drowsiness and hallucinations are some markers of this common complication for people dying in hospital from cancer and other advanced illnesses. On average one in three people in end-of-life hospital care are affected.
Doctors commonly prescribe antipsychotic medications to try to relieve these symptoms. However, our study just published in JAMA Internal Medicine, raises serious concerns about their safety and efficacy.
So, what are we to do for people experiencing delirium, who are robbed of their mental awareness and ability to communicate?