A film on persons at end-of-life: a real record of their last expressions

The original article is written in Chinese by the Shanghai Hand in Hand Care Developing Centre

At the quiet and grim second floor of the hospital where they filmed, the director and videographer were acutely aware that the scenes they captured may be the last records of the patients’ lives. He also pointed out the his videographer that they may well be in the same circumstances in 50 years, looking back that the folly in their youth or the joy of pursuing fame and fortune.

Read the full article here. Please note that the article is written in Chinese.

 

What is your organisation doing for the World Hospice & Palliative Care Day & Voices for Hospices 2017? Let us know in the comments below or email us at aphn@aphn.org!

APHN Mini Interview Series – Dr Ong Wah Ying, Singapore

Dr Ong Wah Ying

Dr Ong Wah Ying

This interview is the first of the mini interview series featuring members of the 17th Council of the Asia Pacific Hospice Palliative Care Network (APHN).

In this issue, we are interviewing Dr Ong Wah Ying, the appointed council member[1] from Singapore.  Dr Ong is also the Medical Director of Dover Park Hospice (DPH) and a council member of the Singapore Hospice Council (SHC), the national umbrella body.

What is something about you that will surprise people?

I used to be the squash captain back in high school! People find it surprising because I hardly exercise nowadays. But I still have a lot of hidden energy in me!

You learnt how to cook when spending 6 months (under the Ministry of Health’s Health Manpower Development Plan) with Southern Adelaide Palliative Care services. What was the experience like?

There was a smoke detector in the apartment and the fire engine will arrive if I do any heavy cooking. So I learned how to cook rice using the microwave oven and that is an achievement! I will mix it with my canned tuna and sometimes hard boiled eggs too!

If you were to choose an object to represent the journey in palliative care, what will it be and why?

I would think it will be a rubber band! Sometimes we need to stretch like a rubber band in order to tie things together. But at the same time, we need to be careful not to overstretch till we snap.

In order to do our line of work, we must try. We must go all the way. We are passionate people. Especially during the training years, most of the time we feel like we can do everything. But we really have to learn to find our own limits along the way and find out when to ask for help from team members. Sometimes we do not even recognise that we are fatigued. Many of us, including me, learned this the hard way.

A rubber band will return to its original shape after stretching. So my experience is to do more when it is time to do more and come back to the original shape. Look for more rubber bands if you need strength and learn to shoot if your target is far away!

Do you see any synergies in the roles you play at DPH, SHC and APHN? What are some areas you think Singapore can be more involved on a regional level?

Yes, definitely. I think APHN needs a greater presence in Singapore. It is important for us to be part of the collective voice for important issues, like stating our stand against euthanasia. The local community needs to know that we cannot be isolated. A lot more can be done in terms of bringing information and ideas across and back. We can collaborate to further extend our local education arms.

Having more involvement from medical students, trainees and various levels of staff will give them greater exposure and broaden their horizon. By being part of a common interest group, we can learn from each other, and be more aware of the updates of developments in services, education and research around the region. We can also leverage on existing knowledge and research to share with other countries, such as by hosting people for attachments and visitors from the region.

I believe that Singapore can contribute by sharing our experiences in non cancers like dementia, how we start-up services as well as new discoveries in the field through the APHN dialog platform. In addition to coordinating sharing by experts in our country, we can learn from experts in the region too. This is something I hope to build across the three organisations.

___________________________________________________________________

[1] The APHN Council consists of 7 members to be appointed by sectors on a rotation to be determined alphabetically according to the name of the sectors (Constitution 12.2a), 7 elected members, and 6 Co-opted member.

The article first appeared in the APHN newsletter Issue 33. Read here.

By: Joyce Chee, APHN Executive

Hospice patient gets his wish to visit new Leica Store

Freelancer photographer Alan Lee, a patient staying at the Assisi Hospice, suffers from end-stage chronic obstructive pulmonary disease. To fulfill his wish of visiting the new renowned camera store in Fullerton Hotel, the clinical team at the hospice came together to plan the trip out. It includes an hour-long tour of the gallery inside the store, and showed the effort of the team in maintaining Mr Lee’s quality of life despite his condition.

Read the full article here.

 

Organising an outing for your patients who are staying in the hospices in conjunction with World Hospice Palliative Care Day 2017? Email us at aphn@aphn.org to let us know and add your event on their website!

Living with dementia: carers’ experiences in their own words

This article was originally on Palliative Matters.

This is the second time palliative care nurse consultant James Daley has used hired actors and verbatim storytelling to bring stories to the stage. The script, which features first-hand accounts by carers of people with dementia whom Mr Daley interviewed, was jointly written by Dr Jane Tolman and Dr Elspeth Correy and Mr James Daley himself. To improve understanding of dementia, facilities managers of residential aged care facilities in Bathurst were keen on supporting the project. They feel that families “don’t understand that it is a terminal illness” when they bring people with dementia to nursing homes, which makes it more difficult for them to instigate the palliative approach.

Read the full article here.

 

Drama is a fun-filled way of presenting heartfelt stories of our patients’ daily interactions. Will your organisation be putting up a drama production for the World Hospice and Palliative Care Day? The theme for World Hospice and Palliative Care Day 2017 is: Universal Health Coverage and Palliative Care – Don’t leave those suffering behind, and will be held on 14 October. Email us at aphn@aphn.org to let us know what activities will you be having to celebrate and support hospice and palliative care.

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.