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.Continue reading
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.Continue reading
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.
For more information, and to begin the survey, please click on this link: Medical practice in the treatment of delirium
If you have any queries, please contact Dr Annmarie Hosie at firstname.lastname@example.org
We think delirium is a pretty big deal here at Palliverse, having devoted quite a few blog posts over the years to discussing this important issue in palliative care.
Well, delirium will be the focus of the first session at the upcoming 4th Australian and New Zealand Society of Palliative Medicine (ANZSPM) Medical & Surgical Update for Palliative Medicine (#ANZSPM17), which will be held between June 23-24th at the Royal Children’s Hospital, Melbourne, Australia.
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.
Of course, delirium is just one of the many great topics that will be examined in detail during the fourth iteration of this biennial meeting. To find out more about the #ANZSPM17 Update, and to take advantage of the early bird registration rate until May 24th, go to: https://willorganise.eventsair.com/QuickEventWebsitePortal/2017-anzspm-update/update
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.
iDelirium, a federation of the Australasian Delirium Association, European Delirium Association and American Delirium Association, has launched World Delirium Day (#WDD2017) in an attempt to raise awareness of delirium and improve its management.
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?
Days two and three of the Australian and New Zealand Society of Palliative Medicine (ANZSPM) 2016 Conference: The Changing Landscape of Palliative Care was just as brilliant as the first. The plenary sessions featured:
- Merryn Gott (@MerrynGott) spoke about the ‘last taboo’ in our community: the invisible and sometimes unexpected costs of providing care at the end of life, which are often not explored in clinical and almost never measured in policymaking and research. She also discussed the impact of culture, ethnicity and gender on who is bearing these financial and non-financial costs. To find our more, read her open access @PalliativeMedJ article here.
- Meera Agar (@meera_agar) discussed the growing evidence base around delirium care in the palliative care setting. Management of this complex, distressing, life-threatening, but often reversible syndrome is challenging. Non-pharmacological strategies and a system-wide approach to organizing and delivering care are crucial, as research into various drug treatments continue to demonstrate a lack of clear benefit and the potential for harm. Meera recommends iDelirium for more information about this important area of palliative care.
- Pippa Hawley reflected on the lack of evidence around the use of medicinal cannabis – despite the immense interest from (and considerable experience of) our communities. How should clinicians respond while the scientific and legal issues are sorted out? Ask questions, keep an open mind & work with our patients!
- Douglas McGregor explored the interface between heart failure and palliative care. He referenced Sarah Goodlin’s open access article, Merryn Gott’s study while discussing prognostic uncertainty and clinician paralysis; and observed that most guidelines still see palliative care as relevant only at the very end of life, rather than a key component of chronic disease management. Amy Gadaud’s (@agadoud) review was flagged as a good place to start when considering issues around early integration.
- Sam Bloore stimulated and inspired delegates with his fascinating talk about dying well in a culture of bitcoin and botox. How can palliative care adapt, survive and thrive in this changing cultural landscape characterized by information overload, mindless distraction and incoherence? We must remain a “subversive” counterculture and continue to strive towards caring deeply and meaningfully!
In addition to these amazing plenaries, fully (and at times even over-)subscribed workshops on the overlap between palliative care and addiction medicine / chronic pain, aged care, literature and the arts were held, alongside numerous excellent oral and poster presentations from specialists and trainees. The enthusiastic and well-informed audience present during all of the sessions was another highlight for me (and I’m sure all of the other speakers and delegates)!
It’s been a wonderful few days in Perth. A big thank you to the Conference organizing committee, chaired by Derek Eng (@dr_engd), for inviting team @Palliverse to be part of this great event. Thanks also to all of you for engaging with #ANZSPM16 on social media. Keep an eye out for our upcoming tweet chats, during which we will continue the conversation about the changing landscape of palliative care!
Here are the first ten tips that came to mind for the management of delirium in specialist palliative care.* Of course, there are many more to list. Please share your top tips in the comments. Continue reading
Delirium is a common, distressing complication of life-limiting illness, yet poorly understood, often misdiagnosed and poorly managed. The Australian Commission on Safety and Quality in Health Care (ACSQHC) recently launched its Delirium Clinical Care Standard. I was fortunate to attend the official launch event on 15th July 2016 – the stand-out of which was the powerful story of Michael, as told by his wife Joan Jackman, who was Community Representative on the Delirium Clinical Care Standard Working Group.
She has kindly allowed me to reproduce her speech here and I hope it will spark discussion about delirium, what we can learn from Michael and Joan’s experience, and how we can do better.
‘Every medical condition is about a person with an individual history, friends and family, and a personal story. The person in the centre of this story is my husband Michael – a healthy, fit, intelligent man – who had been a fitness trainer in the British Air Force before becoming a British-trained Remedial Gymnast in Rehabilitation, for people with a disability. He was an elite sportsman, with a love of life, and also for his family.
Around the age of fifty-nine or sixty, Michael began to experience changes, utmost being that he became increasingly disengaged –with us, and with life! Something was wrong! We sought help. After three misdiagnoses and six years, Michael was finally diagnosed with a Younger Onset Dementia. He was by then, 66 years old. Continue reading