Delirium in palliative care – 10 tips in 140 characters

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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

Palace of Care / I think therefore I am? #gotjnrbak The final update.

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What would happen after the joyous reunion of Poppa and Junior? This was a question asked at our multidisciplinary meeting two and a half months ago. From the accumulated experience of our staff members we thought it could go either of two ways:

  1. Poppa might get a “boost” from being reunited with Junior and other family members, and might improve.
  2. Poppa had used what was left of his energy holding on to see Junior and would continue to deteriorate.

Continue reading

Compassionate Communities: Another Perspective

In the lead up to this week’s #PallANZ Tweet Chat with @PCACEO
and @Palliverse, we are once again very fortunate to feature the
contribution of an international guest – with Dr. Emilio Herrera (@emiliohm)
President of NewHealth Foundation, sharing with us insights from his experience
in developing compassionate communities across Spain and Latin America.

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Dr Emilio Herrera

Dr. Herrera is President of NewHealth Foundation (NHF), a non-profit Spanish institution which seeks to promote new models of health and social care integration; in particular, in the areas of advanced chronic illness and palliative care. He is an expert in palliative care, with long-standing experience in planning and implementing palliative care and integrated health and social care programmes in Spain and Latin America. In recognition of this work, he has received various national and international awards, including the 2015 international “Palliative Care Policy Development Award” from the European Journal of Palliative Care.
* Full Bio follows below

 

Currently in Australia to present a Keynote Address at the 2016 Palliative Care Victoria Conference (if you haven’t already – you should register now!), Dr Herrera very kindly gave his time to speak with us about our #PallANZ discussion this week on Compassionate Communities.


What is a compassionate community – and how is it relevant to hospice and palliative care?

It is a group of people who are able to mobilize to help others in their community who are facing a life-limiting illness, in order to promote well-being and alleviate their suffering.

This requires a cultural evolution and a return to moral principles and values:

It requires the understanding that the care of the people around us is everyone’s responsibility – beyond mere provision of public or private services. It requires continuing work in social awareness to promote general knowledge of how to act in these situations, and preferably, public and corporate policies that could facilitate all of this.

Initially the Hospice movement was closely linked to the community:

The Hospice itself represented a place where people received the necessary care in their last days of life, but also a place of participation for the patient´s families, friends and/or neighbours. Over the years, palliative care has often been medicalised and has lost much of its social character. However, as advocated by Dr. Libby Snallow, the interaction between Hospice and volunteer communities has been as long as its history.

In the years to come, the prevalence of chronic disease and disabilities will increase.  Almost 70% of the world population die after a period of chronic illness. Likewise, the number of family caregivers is declining. With these solid facts, neither the end of life or death can be understood as a failure of medicine—nor can high quality palliative care be offered without the active participation of the community.

What challenges must we overcome to promote compassionate communities?

  1. We have to be more humble. Our two principal barriers are inside ourselves: fear and ego. We must recognize that, as health care professionals, our training does not prepare us to help a community find its own solutions and shape its own future.

  2. We have to change our approach as a health system. In general, it is not easy to focus on the needs of individual people.  As Dr. Julian Abel stated in his “Circles of care”, the person at the centre should be supported by their more intimate community, and around both the patient and his/her inner community, the health and social care services should work like an integrated care system to offer the best of care.

  3. Society must return to recover the dignity of care:  the privilege of caring as opposed to the burden of caring.

  4. We have to design and implement methodologies to interact with the community that will require us to devote considerable time and resources. Implementation of the Compassionate Cities Charter developed by Professor Allan Kellehear and Dr. Julian Abel are a good starting point.

  5. The first challenge is to understand the paradigm of integrating health care, social care and direct participation of the community.

  6. We need to invest in order to achieve efficiency.   We need specific budgets to generate the necessary resources to stimulate the community. An important part of those budgets should come from the community itself and the private sector, not only the government.

  7. We need motivation from our best professionals. They are often tired after so much effort and many years of hard work without getting the expected results.

  8. We need first class social marketing.

  9. We need to align the active participation of different social stakeholders.

  10. We need to understand that empowering a community goes way beyond promoting volunteer organisations.  It involves a change of attitude in the society. This also needs to involve working from and with schools. 

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

In general, we need to create a common social mission. This is much more than a recipe.

This involves working hard to create a different and involved society; to imagine a sustainable social model and restore the value of caring; to implement an enduring story, to create together a legacy that can grow, and to believe in our shared meaning as human beings.

Some tools and specific actions that can help to achieve these aims include:

  • Identifying and promoting good leadership among our experts and the public.
  • Making local maps of aligned initiatives and identifying stakeholders.
  • Networking.
  • Establishing commitments from and with organizations and institutions involved.
  • Recruiting collaborating centres.
  • Raising local financing.
  • Establishing agreements.
  • Designing local projects.
  • Raising awareness campaigns and offering training activities.
  • Designing and using agreed tools.
  • Evaluating the Project by sharing results and outcomes.

As part of Emilio’s work, the City of Seville is set to be recognised as one of the first ‘Compassionate Cities’ in the world, by Public Health Palliative Care International. You can read more about this achievement here. You might also be interested in reading ‘Compassion is the Key’ – where Emilio highlights ‘Compassion’ as the value that should be promoted to transform the healthcare model.

@Palliverse and @PCACEO are extremely grateful for the generosity of Dr Emilio Herrera in sharing his valuable insights with us. You can see Emilio present the Keynote Address at the Palliative Care Victoria Conference on Friday 29th July; Bayview Eden Hotel, Melbourne Australia. Register now!

* Dr Herrera’s background is in medicine, holding a Bachelor of Medicine and Bachelor of Surgery and he is also a specialist in Family and Community Medicine. He continued specialising in palliative care and completed an internship in palliative care at the MD Anderson Cancer Centre Houston (USA), and at Edmonton (Canada). He also holds Master’s degrees in both Health Services Organization and Management, and Senior Management.

At present, the NHF is heavily involved in the development of palliative care programmes in Colombia. In Spain, it has also set up the Observatory of Integrated Care Models (OMIS) in order to identify and make visible, current experiences of health and social care coordination and integration, and to translate knowledge and create synergies. Finally, the NHF is developing the social movement Compassionate Communities and Cities through the setting up of the project “Todos Contigo” in several cities of Spain and Latin America.

An unexpected journey into aged & palliative care

albany wind farm

Albany wind farm

This post is a year overdue. If I were to have written this in April 2015, the title would have been “The tale of two deaths” where I would have reflected upon the peaceful, managed and expected passing of a 93-year-old aged care patient contrasted with the tragic accidental death of a 19-year-old patient whom I’d seen only a week earlier.

But what I’ve learnt is that tragic accidents are random, unexpected and do not happen often. More importantly I have been involved in the end-of life care of several patients since then, that have taught me a great deal about palliative care medicine, the value of open and frank conversations with family and some of the myths surrounding the management of death.

This is also a story of my maturity through being stretched and learning that the part of medicine that I ran away from the most has ended up becoming my greatest passion and future, aged and palliative care.

Continue reading

Planning care for people with dementia

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Two new resources are now available to help with planning care for people with dementia. Palliverse talked to driving force Prof Meera Agar about the ‘whys’, ‘hows’ and ‘whats’.

Q: Why develop care planning resources just for dementia?

A: People with dementia face unique challenges and decisions related to their care and health care needs as their illness progresses; and supporting their choices is made more complex as they become less able to communicate their needs and articulate decisions about what they want from care. While good intentioned, many health professionals in aged care and other settings may not understand the course of dementia, and there may not always be good communication, involving the person with dementia whenever possible and their families,  and also between the different health professional involved in the persons care.

Q: So how do the new resources help?

A: The two new resources are a website offering practical support for family case conferencing and a report providing guidance on critical recommendations to improve advance care planning. Continue reading

How much time have I got, doc? via @ConversationEDU

How much time have I got, doc? The problems with predicting survival at end of life

Sarah Winch, The University of Queensland; Bill Lukin, The University of Queensland, and John Devereux, The University of Queensland

Predicting how long a patient will survive is critically important for them and their families to guide future planning, yet notoriously difficult for doctors to predict accurately. While many patients request this information, others do not wish to know, or are incapable of knowing due to disease progression.

Fuelling this complexity are families who prefer the patient not to be told for fear of torpedoing hope and reducing the quality of time remaining. Conversely, patients may want to know themselves, but do not want to distress their loved ones with this knowledge. Continue reading

Palace of Care – Driving too fast

It had all happened so fast, much too fast. Unwell on Tuesday, into hospital on Wednesday. It was all bad news, he was told that he had only possibly a week or two to live. Confronted with his imminent mortality he decided to go to Hospice. He was worried about how his family would cope with him at home, he wanted to make sure that they would be looked after.

They had always done everything together as a couple, right from when they were teenagers. They had made all the important decisions together. But when it came to the decision to go to Hospice he had made it on his own.

Continue reading

NICE guidelines for end of life care

The National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care in the UK.

In response to the Neuberger report and the demise of the Liverpool Care Pathway, new evidence based guidelines have been developed.

This guideline includes recommendations on:

In my state, Victoria Australia, the VEC (Victorian End of life Coordinating Program) is undertaking similar work, and plans to release a Victorian end of life care plan soon.

In Australia, we have not had the negative stories and experiences seen in the UK; because the LCP was implemented in a better way? The stories coming out of the Neuberger report were shocking: I cannot imagine any patient being denied a drink when requested “because she is on the LCP”. However the LCP has also been withdrawn locally in response to the negative findings delivered in the UK.

I will be participating in a pilot of the new end of life care plans which will replace the LCP locally. I am looking forward to seeing the final version.

Thoughts, dear reader, about the terminal care of the LCP?

 

Review article concerning hospital end of life care in NEJM

Not the traditional festive season article perhaps, but this review article by Dr Blinderman and the late Dr Billings provides a good summary in a very reputable and widely read journal concerning end of life care in hospitals in the United States.

Is end of life care in hospital in the US different?

The article reports that 29% of deaths take place in hospitals in America, a bit lower than I would have expected. In Australia, 54% die in hospital but this includes inpatient palliative care deaths which are excluded from the US figure of 29%.

According to AIHW, 42% of the Australians who died in hospital had some involvement from palliative care  (42% of 54% in hospital deaths is 23%) About a third of patients who died as an admitted patient in hospital (a third of 54% is about 15%) died in inpatient palliative care. That still leaves us behind the US, with around 36% dying in a non palliative inpatient Australian hospital bed compared to 29% in the USA.

Interestingly the NEJM article does not refer to subcutaneous medications which are the mainstay of terminal care medication administration in Australia, New Zealand and the UK. Do US practitioners use less SC medication?

Personally I don’t find that cough and nausea are so troubling at the end of life, and we would promote meticulous mouth care for dry mouth ahead of pharmacological management.

The article also advises us to avoid benzodiazepines for delirium including at the end of life, which I found surprising.

Dear reader, do you have any thoughts? What is end of life care like in hospitals in your neck of the woods?

 

Denton lacks understanding of dying process – a social worker’s perspective

Euthanasia machine, displayed in Science Museum, London

Euthanasia machine, displayed in Science Museum, London

There has been much discussion about physician assisted death in the Australian media in recent weeks. Most of the voices have belonged to doctors (eg this one, this one, this one or this one) or Andrew Denton, with little airtime given to people with life-limiting illness, their family members, bereaved carers, or other professionals who care for the dying. We are sharing an opinion from an invaluable member of the palliative care interdisciplinary team, the social worker.

Below, palliative care Social Worker Zoe Mitchell responds to Andrew Denton’s recent article in The Age (“Doctors shouldn’t look away when dying patients are suffering“). Denton claims that according to palliative care philosophy, “while it is ethically unacceptable for a patient to choose a death that is quick and painless, it is ethically acceptable for them to choose a slow, painful death by dehydration and starvation.”

Zoe says, “I had so much respect for Andrew Denton until now. His article is full of false information about palliative care and shows a lack of understanding of the dying process.

I am no doctor, but I have spent over 4 years working with people who were dying, and while to us it may feel like we are ‘starving’ someone…we are not. When someone is dying and the body begins to shut down, it does not need food or fluids. If we force feed someone it can cause more discomfort and possible nausea and vomiting. If we force fluids into someone and their kidneys are shutting down, it just adds to their fluid overload – again causing discomfort, with fluid in the lungs and swollen limbs. Instead of forcing fluids and food on people with no appetite or thirst, we should be providing quality mouth care to ensure they do not have a dry or sore mouth.

The focus needs to be on good care, this is why we have palliative care. To provide holistic support to the dying person, the important people in their lives and the medical teams looking after them, but also to educate them on what a “good death” can look like.

Before we can even discuss the debate of voluntary euthanasia we need to bring the conversation back to how we can support people to not just die well, but live well until death. In order to do this we need more funding and resources to ensure good palliative care is accessible no matter where you live or your socioeconomic status.”

What are your views about Denton’s article, and nutrition and hydration at end of life? Regardless of your personal views on physician-assisted death, do you think he offers a fair depiction of palliative care? Please share below.

Many thanks to Zoe for contributing to the discussion.