#PallANZ tweet chat

PallANZ 201512

Grief and loss is something we will all face at different times throughout our lives. Whether it is the death of our pets, our friends, our children, siblings or parents; the experience and expression of grief in response to these losses can be a very personal and individual thing. Grief can also arise in anticipation of loss. For those living with life-limiting illness, living with the loss of social role and professional identity can be especially challenging.

Thoughts about old, new and future losses can be particularly common during the festive season. For some of us, it may represent an anniversary of the death of a loved one, and bring with it painful memories of loss. Some might be facing their first Christmas ‘alone’, while others may be grappling with the possibility of celebrating their ‘last Christmas’.

While living with grief and loss is a personal experience, we don’t have to endure it on our own. As a community, there are many ways that we can support each other. Join us to talk openly about living with grief and loss.

TOPIC                    Living with grief and loss

DATE / TIME       10th December, 2015 @ 1900 AEDT

MODERATOR     @Elissa_Campbell

T1 Have you experienced grief and loss? How would you describe it? And what did you need from those around you?

T2 How do children live with grief and loss? How are they different from adults?

T3 What kinds of support are there for people living with grief and loss in your community?

T4 As a community and as individuals, how can we better support those living with grief and loss during the festive season?

Palliverse takes over @WePublicHealth – for one week only!

FullSizeRenderThis week, Palliverse will be hosting the @WePublicHealth rocur (“rotating curation”) Twitter account. You can read more about @WePublicHealth, “an experiment in citizen journalism meets public health”, over at Croakey blog.

This week, Palliverse will discuss a number of public health palliative care topics such as equitable access to palliative care in Australia/New Zealand and globally, access to essential pain medicines, Compassionate Communities, advance care planning, and more. Continue reading

“How can you talk about death to a dying woman?”

Is it just me or is there more discussion about death and dying in the media than usual? Perhaps  we can be encouraged that we as a community are becoming more aware of issues around dying, and better able to discuss things that are important before it’s too late.

Here’s an article from today’s Age about how the writer’s mother was able to express her dying wishes and say goodbye.

 

 

How does it feel to be young and dying?

ElizabethCAplice

Palliverse welcomes a new contributor today. Elizabeth Caplice is an archivist on hiatus. She has Stage IV colorectal cancer, and writes about cancer, and how it intersects with life, particularly in younger adults. Elizabeth has shared a recent photo, to show that “stage IV cancer looks far broader than just some elderly hands with a cannula in them.” (Try doing a Google image search for “palliative care”.)

We recommend Elizabeth’s excellent blog  Sky Between Branches and her Twitter feed. As always please leave responses in the “Comments” box below.


 

Today, I saw my oncologist, and got dealt more bad news.  Stage IV cancer life is mostly bad news, and you come to expect it.  The cancer has spread, again, after only two weeks off chemotherapy – which I needed to take due to my blood count consistently dropping to dangerous levels.  He gently told me that if it was in my bones now, it wouldn’t be shocking, because I was diagnosed with Stage IV rectal cancer a year and a half ago.  I have done remarkably well.  Continue reading

Community members wanted

446px-Uncle_Sam_(pointing_finger)

We want you! (By James Montgomery Flagg via Wikipedia)

We are looking for community members to join our team at Palliverse.

If you are interested in palliative care and would like to contribute to our work here at Palliverse, we would love to hear from you! We are seeking individuals who do not directly work in palliative care, and are keen to invite current, past and future consumers (e.g. patients, carers, family or friend) to come on board. Personal experience with palliative care is welcome but not essential. Prior participation in community advocacy or representation is not required – but sharing our goals and values is a must!  Continue reading

To die at home or in hospital? Aussies want one but we fund the other via @ConversationEDU

Nikki McCaffrey, Flinders University

Where do you want to die? Provided symptoms can be controlled, most people at the end of life prefer to die at home. However, just over half of Australians who died in 2011-12 died in hospital.

In the same year, about A$2.4 billion was spent on hospital care for people aged 65 or older in their last year of life. But only a small fraction of that amount is spent supporting people to die at home.

Public money is being wasted on ineffective and inefficient treatments and health services which do not meet patients’ and families’ needs and wishes at the end of life.

This money would be better spent on palliative care services. Among other benefits, these more than double the chance of dying at home through the provision of home-based support services such as nursing.

Health funds spent on treatments and health services of negligible and questionable value, such as chemotherapy at the end of life, should be reallocated to palliative care services. This would improve our chances of dying well and in accordance with our wishes.

Palliative care is care provided to people living with a terminal illness where a cure is no longer possible. The aim of palliative care is to achieve the best quality of life possible for patients and their families during the illness and after death by relieving symptoms, addressing emotional, social and spiritual needs and reducing suffering.

This type of care is provided by teams of assorted professionals such as chaplains, doctors, nurses, pharmacists, physiotherapists and social workers. It is provided across all types of settings, including hospitals, hospices, residential care facilities and at home.

A recent report suggested investing A$237 million in providing palliative care services at home rather than in hospital wouldn’t raise the total health care spend but would increase the proportion of Australians dying at home from 14% to 30%.

High-quality palliative care is person-centred and compassionate. Emerging evidence suggests this type of care could even lower health costs, mainly by reducing hospitalisations at the end of life.

Palliative care in hospital

Inevitably, and appropriately, some people will need or desire hospital care at the end of life. The Australian Institute of Health and Welfare’s recent update on palliative care services in Australia showed that over the past ten years there has been a 52% increase in hospitalisations for which the main purpose of care is palliation.

https://datawrapper.dwcdn.net/nxLVD/1/

This trend will continue rising due to our increasing, ageing population and earlier warning of death.

In 2012-13, 42% of people who died in hospital were receiving palliative care. Providing specialised palliative care in hospitals, particularly early on, can reduce hospitalisation costs by shortening the hospital stay and reducing intensive care and laboratory costs, as well as improving quality of life.

What about informal care?

In 2011-12, Australia spent A$140.2 billion on health. Roughly a third of total health costs is associated with people in the last year of life.

But this estimate does not include costs to the individual or their family. Recent research suggests as much as a third of total spending on caring for people at the end of life falls on family and friends.

Without the support of informal carers, home-based care at the end of life would often be unachievable. Smaller, more geographically spread out families, higher divorce rates and changing communities mean these support networks are likely to shrink at a time when the need for them is growing.

When planning health-care services in this setting, it is essential we also think about informal care costs. We need to make sure we avoid over-burdening families who are a vital part of end-of-life care.

Achieving a better death

Without adequate palliative and end-of-life care, people will continue to be cared for and to die in hospitals despite most Australians wishing otherwise. Patients will have a poorer quality of life at the end of life. Families will suffer unnecessarily. Care will not be provided efficiently.

We are all going to die, but how will we die? Investing in palliative care services will improve our chances of dying well and in accordance with our wishes.

The Conversation

Nikki McCaffrey, Health Economist with Palliative Care Clinical Studies Collaborative (PaCCSC), Dept Palliative & Supportive Services & Flinders Health Economics Group (FHEG), Flinders University

This article was originally published on The Conversation. Read the original article.

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.

Palace of Care – Hello

2POC2

Engaging with uncomfortable dialogue – Demystifying palliative care

Like many of you I was glued to Q&A last night.  The topic was “Facing Death”
and the discussion pivoted around the panel’s view around the right or otherwise of Australians to have access to euthanasia.

Needless to say the twittersphere was running hot,  but clear to a number of commentators was that many were poorly informed about the topics at hand.  From my perspective one of the most concerning issues was a lack of understanding about what palliative care is and assumptions that it is on some level the same as euthanasia.

Tweet 1

Continue reading

“Do Not Resuscitate” – Is it always right to be resuscitated? @InsightSBS

Tonight in Australia (Thursday, 5 November, 830pm), SBS Insight tackles the topic of cardiopulmonary resuscitation and whether it’s always the right thing to do. (There are some familiar faces in the preview video!)

The discussions on Insight are usually excellent. I’m hoping for some thoughtful conversation about advance care planning, and hearing from people with life-limiting illnesses and their loved ones.

Palliverse will be participating in the Twitter chat surrounding the show (#insightSBS).

You can also join the conversation at Insight’s Facebook page.

I hope there’s enough time for everyone to recover from last night’s Q&A!

@Elissa_Campbell