Dispelling the palliative care myth

 From PCAeNews

In Australia, palliative care services are available in hospital, in the community and in aged care facilities with support from a team of health professionals. Peter Jenkin, a specialist palliative care nurse practitioner at Resthaven, points out that palliative care supports the patients, and their family and friends. It is not just the dying person who needs support, family and significant others are also affected.

Read the full article here.

7 Top Tips For A Dementia-Friendly Family during festive celebrations

“It’s only when we truly know and understand that we have a limited time on earth – and that we have no way of knowing when our time is up – that we will begin to live each day to the fullest, as if it was the only one we had.” – Dr. Elisabeth Kübler-Ross

During this new year, let us celebrate life to the fullest with our loved ones while we still can, remember those who may be going through a tough time by sharing our love, and cherish every moment together.

In this article, the author shares her experience of spending Christmas with her father who has dementia, and provides suggestions on how families such as hers can celebrate the festive season in their own special way.

1. Change expectations

2. It’s all about inclusion not exclusion

3. Moods are contagious

4. A space that works

5. The Table

6. Appropriate Conversation

7.  Gift Exchange

Read the full article here.

What to say when someone is dying; tips from a master in her field

  1. ACT NORMALLY – there is no need to lower your voice or be sad all the time.
  2. BE THERE – here is huge value in just spending time with them, letting them laugh and allowing them too, to be their normal selves
  3. NOT TRYING TO LEAD CONVERSATIONS – It is much safer to ask questions that enable the person who is dying to take the lead
  4. DO NOT PUSH YOUR IDEAS OR AGENDAS ON THEM – “You can easily say things that aren’t appropriate and sometimes people don’t realise they’re doing it.”

Read more about palliative care nurse practitioner Nikki Johnston’s experience and encounters with her patients here. Check out more of her insights!

From Palliative Matters


What happens when palliative care intersects with other specialties?

Loving Brandon was hard. Not because of Brandon – he was a beautiful boy. He had beautiful eyes and a gentle heart.  He loved massages and his face lit up during sensory therapy. He also had severe brain damage and limited ability to communicate. We could never know for sure how much he did or didn’t understand, but we feel certain he knew his people and he understood love.

Loving was not hard because of Brandon. It was hard because it hurt so badly to watch him suffer. On top of his severe cognitive challenges, Brandon had a contagious respiratory infection. That meant there were lots of rules around how and where he could be cared for. The rules came from a good intentions –  intentions to help cure and to protect others from infection. But for a child who already has a life limiting condition, those rules were pretty hard to understand.

Brandon only had a small circle of people who really knew him. He couldn’t speak up like a typical kid and tell someone when he was hurting, sad or sick. It broke our hearts when he moved to a specialty  respiratory diseases facility, even though it made sense medically. We knew that no treatment on earth could offer him a long life, so we wished for his remaining time to be peaceful. We wanted him to have security, comfort and a predicable routine – things we knew were important to him.  But treatment for his respiratory condition plunged him into a new routine, a new system, and left him surrounded by strangers. Kind strangers for sure – but they didn’t know Brandon.

There are no easy answers in palliative care.  Brandon’s story will always break our hearts. We are thankful we were able to visit with him in his isolation unit, but incredibly sad he was not at home when he died. These situations push us to keep talking, keep asking ourselves the hard questions – what happens when palliative care intersects with other specialty areas? Sometimes different branches of health care  act in synergy –  mental health, physiotherapy and many other specialties are vital components of end-of-life care. But sometimes it’s not so simple. The right thing in one book is not the right thing in another. We are so grateful that these discussions are part of medical practice these days. Our hard conversations belong to a wider debate. Scientists and doctors around the world are studying and talking about these issues.

For us, right now, we are feeling sad that Brandon has died without returning home. We wonder if we failed him somehow, if we could have changed things. It’s a pretty normal part of grief to ask these questions, but its also part of understanding and processing this painful sorrow.  By seeking to understand, we are seeking to find a way forward,  to figure out what our hearts say about some of those hard questions. Sure, there’s a whole lot of research going on – but sometimes what your heart tells you makes a lot of sense.

For us, right now, our hearts are feeling incredibly sad.

The article above is republished with permission from Butterfly Children’s Hospice. Read other articles at their blog here.

My job in palliative care let me practise social work as it is meant to be

From Pallium India Newsletter

“It has been an opportunity to practise social work as it is meant to be – empowering, enabling but not afraid to face and challenge conflicts and difficulties both within families and communities but in wider society. A far cry indeed from the care management model that most adult social work has now been reduced to.”

Palliative care social worker Suzy Croft had come into this line some 26 years ago, when the term “palliative care” was unknown. She was part of a multi-professional team that supported people with terminal cancer and their families. Though in the past few years, Suzy faced difficulties while helping her clients in need of support from the state, she found that families and friends remain the greatest support for people with life-threatening or life-limiting conditions.

She feels that “palliative care social work has been a wonderful field in which to work” as it involves working with other professionals, but most of all, because it provides an opportunity to work with a diverse group of patients and their families. Life-threatening and life limiting illnesses are no respecter of class, income, age, ethnicity, gender, sexuality, religious belief, immigration status, mental health or learning difficulties. Palliative care social workers offer a wide range of support to patients and families from practical help and advice around income maintenance and debt counselling, help with housing and accessing other services through to advocacy, individual and family support and counselling and help for bereaved adults and children.

Read the full article here.

Fallen Angels – Mahesh’s Story

From the eHospice newsletter

Mahesh was diagnosed with bone cancer soon after his birth and was brought to the major cities in southern India, to seek help and treatment. In these cities – Chennai, Hyderabad, Vellore and Bangalore – were established pain and palliative care centres, none were referred to Mahesh’s parents. By the end of four years, the family had racked up a huge debt from the medical treatments and had sold everything they owned.

Mahesh’s parents, together with personnel from palliative care teams from Hyderabad and Tricandrum, watched him pass away a day after his fifth birthday, hooked onto machines and in pain. A senior palliative care physician was reported feeling “ashamed” as the child was not referred to them despite being next to a hospital Mahesh was taken to.

Read the full article here.

Engage communities and train carers to provide end-of-life care: UK expert

pcaFrom Palliative Matters

In this article, Dr Richardson, joint chief executive of St Christopher’s Hospice and an honorary professor in the International Observatory on End of Life Care at Lancaster University, shares some of her thoughts.

Presenting at the Palliative Care Victoria conference today, Dr Heather Richardson said while the UK sat at the top of the 2015 Quality of Death Index, it “had done appallingly” in terms of ensuring access to care. She said 100,000 people every year don’t receive palliative care even if they would benefit from it.

“Our focus is on the person in our bed or in front of us and we fail to remember the many who are waiting to get in, or who have never been referred. That is one of our blind spots.”

Dr Richardson said she saw value in shifting focus from lobbying for increased funding, to changing public perceptions of palliative care and engaging and up-skilling local people and communities who could contribute to end-of-life care.

Read the full article here.

Our global complicity in torture?

From Pallium India Newsletter

Imagine you were dying and suffering from constant, severe pain that made you wish for death. Treatable pain. Opioid medication could readily alleviate it, but it wasn’t given to you. Cruel? Inhuman? Degrading? Torture? What would you call it?

Read more here.

Practical ways to help people who are dying

From PCAeNews

“Support is ongoing, it’s not just the beginning and the end, it’s all the days in between.”

Gayle Sweaney, the chief executive officer of Palliative Care ACT, says the group is going to incorporate Ruth’s story into their education programs for volunteers and community members.

“We loved it so much we’re going to use it to hopefully inspire those who are in the same situation,” Ms Sweaney said.

Andrew says Ruth would be happy to know that her story might help other people. “She wanted to help people by showing them how to live and how to be happy, to take each day and live each day and be happy. She took the attitude I can die happy and enjoy what I have left or I can be miserable and say poor me and die unhappy.”

Read the full article published on the CanberraTimes here.

Video builds carer confidence in giving injectable medications


From Palliative Matters

Dear friends, a video designed for carers looking after someone at the end of life who may need to administer medication to control symptoms such as pain, nausea, vomiting, anxiety or terminal restlessness has been created in Australia.

A significant proportion of the Grampians region did not have 24-hour access to on-call palliative care services. This made it important for carers to be empowered to proactively  manage end-of-life symptoms. They have people in very isolated areas where hospitals may be a two-hour drive away.

Please read and share this article on presenting the information in written and video formats catered to different learning styles. It may be an idea for your palliative care service!

Read the full article here.

Caring for the Terminally Ill and Those in Pain

“A study published in 2014 found that one third of the doctors in UP had not heard of palliative care.” Share this now to spread the word about palliative care!

Today, medicine focuses on the disease only, while palliative care looks at the person and the family. We consider the treatment of the disease important, but we consider the person and their family more important.
Palliative care aims to improve the quality of life. This goes hand-in-hand with curative treatment and continues to care for the person even if a cure is not possible. It also continues to support the family when the patient is gone.

Read the full article here.

A Changing Force in My Life

Monika Ahuja was diagnosed with a sarcoma of the left leg that eventually metastasized to the lungs and brain. Eventually as the truth unfolded to her that life is limited, she was unable to discuss with her family her thoughts about her illness due to their reluctance to accept the inevitable, and she started to convey through her songs how broken she feels inside and how deeply she wishes that this suffering will come to an end. She sings songs preparing all those dear to her of how to live and move on in life without her. Such preparedness for death is breathtaking for the author and the rest of the hospice team, and it makes them wonder if they would be able to prepare for their own death in the exemplary manner that Monika is setting. Monika has very strongly reinforced the lessons of life to the author, who wants to pass them on to family, friends, and all those working in health care.

Read the full story here.