Advance care directives, palliative care, and euthanasia

respect

[Image by Nick Youngson]

Why do palliative care people bang on about advance care planning all the time?

Well, when you break it all down, advance care planning is all about respect. Respecting the values, goals and preferences of the person making the plan. And palliative care is really big on respecting people’s preferences and values, especially when it comes to their end-of-life care.

Unfortunately, when it comes to respecting people’s choices around their health care, the law has been lagging behind. Existing laws around advance care plans and medical decision making are often confusing for patients and families, as well as their treating clinicians. Fortunately, this is all about to change in Victoria.  Continue reading

Raise awareness for World #Delirium Day 15 March 2017

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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.

Journal club on delirium #hpmjc

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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 answer this question, Professor Meera Agar (@meera_agar) and colleagues from the Palliative Care Clinical Studies Collaborative (PaCCSC) conducted a study examining the use of these medications. The results of their research was published in JAMA Internal Medicine recently, and also discussed on various media platforms (examples here, here and here).

Please join Hospice and Palliative Medicine Journal Club (#hpmjc) in January 2017 for an in-depth discussion about this important study. The journal club will be hosted by Chi Li (@Dr_Chi_Li) from Palliverse and feature the paper’s first author, Meera Agar (@meera_agar)!

When? The hour-long online journal club will start at (please note the different dates):

  • Auckland: 9am, Tuesday 24th January
  • Sydney: 7am, Tuesday 24th January
  • London: 8pm, Monday 23rd January
  • New York / Toronto: 3pm, Monday 23rd January
  • Other cities

Who? Anyone and everyone who has:

  • Experienced delirium themselves
  • Cared for or lived with someone with delirium
  • An interest in improving the treatment of delirium
  • An interest in enhancing palliative care

How? It’s easy!

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 (chi.li.australia@gmail.com or palliverse@gmail.com).

We hope you can join us for a great discussion about this important study!

 

Ramblings from the past, as I think about 2017…

Excellent writing from Kate Swaffer, with links to some of her previous posts. Her blog is essential reading for anyone who works with people living with dementia.

Creating life with words: Inspiration, love and truth

World Dementia Council members 2016 World Dementia Council members 2016

It is already mid January 2017, and I’ve not yet posted a blog, so am hoping to rectify the today! I started this ages ago, but have had trouble paddling since December so have not achieved very much at all. Anyway, it may be worth looking back and reflecting as we prepare for yet another year. The years certainly fly by so quickly as one gets older, which I wrote about many years ago, but cannot find that particular blog.

As I have a lot of new followers of this blog, I thought I’d highlight a few from over the years (easier than writing a new one, by the way!). The grief of dementia is one of the most unspoken of topics, not our grief families feel as we change and lose function, then die, but the grief we feel as we lose capacity and as our abilities change to disabilities, and we are…

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“Failure to maintain”: do hospitals cause suffering in older people?

Today Palliverse talks to Assistant Professor Kasia Bail (@Kasia_Bail) from the University of Canberra. Kasia is a nurse, a researcher, a kung fu instructor and a drummer in a metal band. She came to our attention via social media when we noticed her crowdfunding campaign for the next stage of her research into nursing care of complex, hospitalised older people. Here at Palliverse we are fans of crowdfunding, although we’re yet to use it for research purposes!

Kasia’s research aims to improve sustainable acute care health delivery for an ageing population, while her clinical experience includes general medical and acute palliative care. In her PhD, Kasia developed an approach to measure nurse-sensitive outcomes, which is currently being used to evaluate a Government-funded implementation of a cognitive identifier. Kasia has a passion for identifying and researching the structures and processes which impede or enable quality patient care, and sharing her learning and inquiry with nursing students, industry and professional groups. Here, Palliverse asks her about her latest research project and dipping her toe into the world of social media.

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Dr Kasia Bail (image via Dr Bail)

Your research has led to a new concept in the care of older people with complex medical problems, “Failure to Maintain”. What does this mean? Continue reading

#4APCRC: 4th Australian Palliative Care Research Colloquium

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Members of team Palliverse had the pleasure of attending the 4th Australian Palliative Care Research Colloquium between October 27-28th, which was once again held in the comfortable surroundings of the Rendezvous Hotel in Melbourne, Victoria.  Continue reading

#ANZSPM16 tweet chat: the (hidden) cost of caring

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A game changer at the recent Australian and New Zealand Society of Palliative medicine 2016 Conference (#ANZSPM16) was Dr Merryn Gott’s plenary presentation on the hidden costs of caring. Little is known about the financial impact of caring for people at the end of life.

She detailed some powerful anecdotes, including the story of two sisters whose mother lay dying in a hospital. The cost of parking was prohibitive and the daughters took it in turns to sit in the car watching out for the parking inspector. When their mother died, only one of the daughters was there; the other was in the car. Continue reading

#ANZSPM16 Wrap up

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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 (@agadoudreview 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!

 

Michael’s story: Delirium – “the fear on his face was palpable”

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.

 

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Michael loved the Australian bush. Photo: Wayne Robinson

Michael’s story:

‘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

Compassionate Communities: An International Perspective…

In the lead up to this week’s #PallANZ Tweet Chat with @PCACEO
and @Palliverse, we are very fortunate to feature the contribution
of Dr Heather Richardson, Joint Chief Executive,
St Christopher’s Hospice London
, sharing with us from her
experience, insights into building compassionate communities—
an international perspective from which we all can learn and benefit…

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Dr Heather Richardson

Prior to her current role as Joint Chief Executive at St Christopher’s,
Dr Richardson held posts of National Clinical Lead for Help the Hospices,
and Strategy Advisor at St Joseph’s Hospice. She has a wealth of experience as a general, mental health, and palliative care nurse; and holds a Master’s degree in Health Management as well as a PhD.

In 2015, Dr Richardson was appointed an Honorary Professor of the International Observatory on End of Life Care at Lancaster University, and her work is featured in Compassionate Communities: Case Studies from Britain and Europe, edited by Klaus Wegleitner, Katharina Heimerl, and Allan Kellehear.

 

Dr Richardson is in Australia presenting a Keynote Address at the 2016 Palliative Care Victoria Conference (if you haven’t already – you should register now!), and she very kindly gave time from her busy schedule to speak with us about our #PallANZ discussion this week on Compassionate Communities:

 

So, what is a compassionate community – and how is it relevant to hospice and palliative care?

This is a great question and one that a number of us have been pondering in the UK. There is a growing belief amongst hospices and others that compassionate communities could help improve the experience of dying and loss in the UK. This change is a key aspiration on the part of hospices and other palliative care services.

Compassionate communities have a similar aim and it is this mutual ambition that makes compassionate communities relevant to hospice and palliative care. Most importantly hospices are increasingly realizing that even with the best will in the world they will never achieve the reach, their vision that death and bereavement is seen as part of life, and the improvements in care required without drawing on the energies, relationships and connections in communities.

 

What challenges then, must we overcome to promote compassionate communities?

These challenges are significant but there is real appetite on the part of many in the UK to overcome them. Research being undertaken by Sallnow in East London, currently unreported, confirms that individuals and communities who see themselves as the first members of a local compassionate community, highly value the contribution being made by their local hospice to support their efforts. This suggests that hospices do have a role to play, but there is no doubt that they will have to change the way they work if they are to be effective in promoting and supporting compassionate communities.

In particular they will need to review their approach to risk management, which can serve to constrain the potential contribution of volunteers. They will also need to consider carefully how individuals working as part of a compassionate community are described and positioned. To whom do they belong and have accountability? Are they similar or different to traditional hospice volunteers and is that term transferable? Thinking differently about training will also be necessary. Moving from a place where training focused on “doing things the hospice way” to helping people recognise and harness their own capacity and that of the community to which they belong is a significant shift.

 

In what ways can we build meaningful and effective partnerships between palliative care professionals and the broader community?

These partnerships will be vital if significant improvement in the experience of people who are dying or bereaved is to be achieved.

Hospices are in a privileged position in this respect. Many were conceived by the communities that they serve and enjoy prolonged and vital partnerships around fundraising and volunteers. If they can make the shift in mind-set from a professionally driven service to a community enabled network of mutual support around death, dying and loss they will be able to build on these relationships to the benefit of local people.

Hospices and other palliative care services are also well integrated into health and social care systems. With an open mind and a generous spirit, they could become part of a rich web of partnerships that draw together their staff and volunteers, statutory providers of health and social care, commissioners, policy makers, community development organisations and most importantly community leaders, members and groups. Their work together will be key to transforming care which for many is currently unsatisfactory and of an unacceptably poor quality.


 

SO, dear readers, given that the UK is an international leader in building
compassionate communities, what can WE all LEARN from the UK experience?

Join us on Wednesday 27th July to share your thoughts during the #PallANZ Tweet Chat on Compassionate Communities.

@Palliverse and @PCACEO are extremely grateful for the generosity of Dr Heather Richardson in sharing her invaluable insights with us. You can see Heather present the Keynote Address at the Palliative Care Victoria Conference on Thursday 28th July; Bayview Eden Hotel, Melbourne Australia. Register now!