Asia Pacific Hospice Palliative Care Network and Palliative Care Australia : Syringe Driver Exchange Programme

With the phasing out of Graseby syringe drivers in Australia with the introduction of alternatives, significant numbers of these useful devices could be made available for palliative care services in the region.  The Asia Pacific Hospice Palliative Care Network (APHN) and  Palliative Care Australia (PCA) propose a mechanism whereby a palliative care institution (APHN Organisational Member) initiates a request to APHN by filling in the details below. Successful applicants will be informed and PCA will connect them to a donor service in Australia. This arrangement hopes to facilitate a donation of useful syringe devices across international boundaries as well as networking.

Invitation to bid – 13th Asia Pacific Hospice Conference 2019

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The APHN Council is pleased to invite member organizations wishing to host the 13th Asia Pacific Hospice Conference 2019 to send in their application to the APHN Secretariat.  Closing date for submission of application and bid documents has been extended till Friday, 31 July 2015.

Click here to download the bidding document template and the procedure for application.

Please email the bidding document to aphn@aphn.org.

Please note to send your file as “Bidding document for 13th APHC_<your organization name>”

 

1st Online forum Discussion on Paediatric Palliative Care

Poster

APHN has set up our very own online forum platform for discussion on palliative care issues. We hope the forum can serve as a contact point to link individuals involved in palliative care to foster collaboration, share knowledge and start discussions in this area. The 1st forum discussion topic will focus on Paediatric Palliative Care. The forum will be accessible for members to log in from 31 January. Click here to view the forum.

 

Barry Ashpole Media Watch: 13 April 2015 (#405)

An article from Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada). More reports can be found at IPCRC.NET

Awareness of palliative care among doctors of various departments in all  four teaching medical colleges in a metropolitan city in Eastern India: A survey

Journal of Education & Health Promotion | 26 March 2015 – The results suggested that 85% of the doctors [i.e., study participants] felt that cancer was the commonest reason for the palliative care teams to be involved. Seventy four percent … mentioned that pain control was their prime job; 53% said that they are enjoying their encounter with palliative care, so far; 77% of the doctors thought breaking bad news is necessary in further decision making process; only 22% of the doctors reported the WHO ladder of pain control sequentially, 35% of the doctors believed other forms of therapies are useful in relieving pain, 35% of the doctors thought that they gave enough importance and time for pain control; 77% said that they had heard about a hospice, among them still 61% of the doctors thought that the patients should spend last days of their life at home. Thinking of the future, 92% of the doctors think that more and more people will need palliative care in the coming days. Amongst the doctors of various departments, there is a lack of training and awareness in palliative care…read more

New project reaching older people in urban slums begins in Bangladesh

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The Worldwide Hospice Palliative Care Alliance (WHPCA) is delighted to announce the start of a new project and a partnership with The Centre for Palliative Care Bangladesh, part of Bangabandhu Sheikh Mujib Medical University (BSMMU).

This pilot project will extend outreach palliative care services into two urban slums in Dhaka. It is expected that within the one year project, we will reach 100 older people and their families with palliative care services and provide an evaluated model of care for future work.

What are we going to do?
We will be taking a detailed look at the current situation in two urban slums, and the specific palliative care needs of older people and their carers in these communities.

This will enable us to plan and design the subsequent activities to effectively meet the need, in collaboration with the community directly.

The situation and needs analysis will provide the detail for the following framework of activities:

  • Running sensitisation programmes in the slums, to increase understanding and awareness of the need for palliative care.
  • Recruiting up to eight assistants from the slum community, and training them in palliative care. The assistants will be responsible for identifying people in need of palliative care and for providing basic palliative care in their homes.
  • Linking Palliative Care Nurses from the Centre for Palliative Care with the Community assistants to guide and mentor their activities.
  • Linking up with other community health workers, organisations and groups working in the slums to better meet the holistic needs identified.
  • Providing palliative care outreach services to at least 100 older people and their families in their homes.
  • The training – and subsequent delivery of palliative care – will be based on the Palliative Care Toolkit, a key resource for palliative care in resource poor settings.

Read more about the project here.

From ehospice

Aunt Jaew’s last mission – a story of forgiveness from Thailand

Written by: Sutera Pimrose, APHN member

Sutera Pimrose, palliative care nurse at Karunruk Palliative Care Center, Srinagarind Hospital, Faculty of Medicine, Khon Kaen University, Thailand, shares a beautiful story of families and palliative care professionals working together towards spiritual freedom before death.

“Suppang aparatangkamathamaypanteaugasatavarratayenagatangsuppangaparathang kamathameapanteaugasakhamami pantea…”

“Whether by body, by words, by the mind, whether in front of you, or behind your back, if we have ever shown any rudeness to you, we ask for you, Mother Tone, to forgive us. We will behave with all goodness in the future.

“May our merit that has been made and accumulated in the past, and will be conducted in the future, come back with a good result to us and to you, Mother Tone. May your grandchildren be prosperous and grow old with wisdom, health, strength, luck, good rank and all other good things. May all sufferings and ill health be kept away and may your suffering we pray finally be finished.”

Rituals of forgiveness

After these Pali words had been prayed, they were followed by a pardon. I asked the four daughters to bend down at their mother’s feet, and they whispered their pardon: “Please forgive any misconduct or rudeness we may have done to you in our lives”.

Their mother looked restless and her breathing was weak, she was hardly able to say a word. But when she realized that her daughters had come to ask pardon she said: “May all of the merit you have made today come back to you, your mother forgives you everything.” I assisted her to press her hands together at her chest while she tried to say “Satu!”

“Mother will be gone soon, this is the last thing she needed to do, she has no worries now and she can go in peace.” This was said amongst the nurses and her daughters at end of Mother Tone’s life in the hospital bed.

The benefits of setting an Advance Care Plan

My work that day in caring for Mother Tone and her daughters was not the first encounter with this family. Our palliative care team – led by Dr Srivieng Pairojkul and Khun Parichard – had already talked with the family about an advance end of life care plan and we were able to find out the patient and family’s wishes.

They wanted Mother Tone to die in hospital and did not want any resuscitation efforts but only required her to be made comfortable. Our team began to relieve her terrible feelings of breathlessness, starting with small doses of regular morphine to reduce her fear and anxiety, so she could at least sleep.

While this was happening, her daughters wanted their mother to make merit and they themselves to ask for pardon. Whenever I have a chance to assist families and patients in asking for pardon, I am reminded of one of the first patients I cared for in this situation.

Aunt Jaew’s story

I was reminded of Aunt Jaew. She was a middle aged, tall and round lady with a deep voice. Our team had a chance to know her because she was the wife of Uncle Pook, a patient with end stage Cholangiocarcinoma. Aunt Jaew told us that she and Uncle Pook had loved each other very much and had been together for 40 years without being separated.

“Whenever you see Aunt Jaew, you will see Uncle Pook,” she said. They are a couple who have gone through thick and thin together. The day Uncle Pook had to go to hospital; Aunt Jaew had never thought that it would be for the final stage of his life. It made it very hard for Aunt Jaew to accept that Uncle Pook was dying.

However, Aunt Jaew’s strength did not wane and even though she now knew that there was no cure for her husband’s cancer, she would not let it affect her. She had been a village chief; she was tough in making decisions and she seemed determined not to show weakness or fear.

On the day, I and Parichart, another nurse from our team, talked with Aunt Jaew and explained the need to work with the family to relieve Uncle Pook’s physical and emotional suffering, the family agreed that this is what they also wanted.

Controlling Uncle Pook’s pain was difficult; he was in liver and kidney failure. After assessment and treatment by Dr Srivieng, morphine was finally effective, given every eight hours to relieve his pain. He was able to sleep during the night and the family was very happy. After the physical symptoms were managed, we were requested to arrange a forgiveness rite.

“I was rude to him quite often before and he was also rude to me. When I was a village chief, we quarrelled. He chased me with a gun and burned my village chief  uniform. I couldn’t blame him. I have forgiven him. We want to conduct mutual forgiveness in front of him, would you help me?” asked Aunt Jaew.

“So, we will meet tomorrow, we will prepare five aggregates for you,” I said.

Accomplishing spiritual freedom

The next day, our team got together on Uncle Pook’s ward. We were ready to work with cheerfulness, because ‘working is merit making’. Lord Buddha said that “a part of giving alms is forgiveness; the effect of forgiveness and dedicating the merit made to someone else; such a practice will produce more effective merit than giving to Lord Buddha himself or to a hundred Arahant, a perfect one.”

We all got together beside Uncle Pook’s bed. I acted as the leading speaker. After the very emotional forgiveness ritual was over, we quietly cheered and asked Aunt Jaew and Uncle Pook to exchange kisses. “Oh! I have never done such a thing before, kissing! Oh! I have never done it, really,” said Aunt Jaew. Eventually she couldn’t resist our encouragement and she bent her cheek down for Uncle Pook to kiss and she kissed Uncle Pook in return. It made a cheerful sound in the quiet room. Uncle Pook was smiling, as was everyone else present.

A ‘Smiling Death’

My work with the team that day will not be the last one in serving the patients and striving to provide spiritual care. But for Aunt Jaew, this was the last time for her as a wife to ease her beloved husband’s spiritual needs and allow him to leave this world peacefully.

Both Aunt Jaew and Uncle Pook now have spiritual freedom. They have accomplished their last mission here on earth. From the last look of him before he died he looked like a person asleep with a small smile on his face. It seemed that Uncle Pook had left this world with acceptance. He was the first patient who showed me a ‘Smiling Death’. May you sleep happily, Uncle Pook.

From ehospice at http://www.ehospice.com/ArticleView/tabid/10686/ArticleId/14754/language/en-GB/View.aspx

Love overdose – a family story from Thailand

Written By: Dr Tharin Phenwan, APHN member

Dr Tharin Phenwan, coordinator of the Pal2know project, writes for ehospice about a palliative care patient whose family’s love and concern made it difficult for him to talk about his illness and make his needs and wishes known.

“We’ve got a new consultation from ER, doctor. He’s our old patient,” one of my nurse colleagues told me. She was talking about Mr Yuth, a gentleman in his fifties with advanced stage liver cancer and a massive amount of fluid on his lungs. We quickly browsed through his medical record and met him at the Emergency Room. The man had fallen down earlier this morning and was brought to the hospital by his daughter and son-in-law.

Mr Yuth’s story

There he was, sitting on the bed, looking grim and depressed. His wound was already cleaned and stitched up neatly.

“Good afternoon Mr Yuth, may I ask you what happened today?” I asked.

“He fell down while he was walking in the yard, doc.” Answered Chai, the son-in-law. This surprised me a bit.

From the medical record, the palliative care team had already discussed the diagnosis and prognosis with the family. The daughter and son in law firmly instructed the team not to disclose any information to the patient, convinced that he would “lose the will to live.”

Sadly, in most cases in Thailand, the patients are usually the last one to know about their own illness. This was the case with Mr Yuth.

“Is that so? Is there anything else you want to tell me?” Mr Yuth’s eyes flickered and he looked at me for the first time. It was a good start. We moved him to a more private area inside. I closed the curtain and sat down next to his bed.

“It is so hard to breathe and it hurts so much, doc,” he confided.

“It hurts?”I first thought of the pain in his abdomen, but that was not the case.

“My head hurts,” he said. “There are so many things going on in my life right now.”

“Could you tell me about them?” I asked gently. “If you don’t mind, of course,” I added quickly.

“Well, there is my disease… and also my family, they…”  Suddenly the curtained was snapped open by Mr Yuth’s son-in-law.

“He seems fine to us, doc. We have everything under control, me, my wife and also Ma (Mr Yuth’s wife).”

“I’d rather die than live like this”

As soon as Chai started talking, Mr Yuth regressed back to how he had appeared when I first met him, with an empty gaze and an expressionless face. Chai seemed to catch on to the atmosphere and left us alone again.

I talked with Mr Yuth for few more minutes. It turned out that he already knew he had terminal cancer, despise the desperate effort from the family to withhold this vital information. He also stated that his primary doctor was only giving supportive medication, such as vitamins. He also hadn’t initiated talks about advance care planning, and did not tell Mr Yuth about progression and prognosis of his disease, as the family had asked him not to.

“It is so humiliating, doc,” said my patient. “I used to be able to walk around and now I can’t even go to the toilet without help! I’d rather die than live like this!”

“Is that how you feel?” I asked. “To be better off dead?’

“Yes! This life, this… existence…is nothing! I can’t do anything on my own! Not even the god damn breathing!”

He fell silent for some time, lost in thought. Eventually he whispered to me: “To tell you the truth, doc, I didn’t really fall down this morning. I wanted to croak, so I just dropped down onto the concrete floor. To keep living like this is just a burden to others!”

I could see from his medical history that Mr Yuth had multiple problems in this visit. Apart from uncontrolled symptoms, he had existential crises as well.

An overdose of love

He had spent most of his life overseas, sending send his savings back to support the whole family. After he got sick, Mr Yuth came back to live with his family in who, for better or worse, take very good care of him.

And by “very good” I mean that they took care of literally everything. Whether it was his meals, his bath, helping him to the toilet, his doctor’s appointment, his medications… This “overdose” of loving care even extended to his treatment plan; hence the homogenous vote within the family for not telling him about his cancer which came from the previous family meeting with the palliative care team.

They were busy doing things for him without even asking the former patriarch what he really wanted. He was now just a remnant of a man he once was. A shadow, replaced by a grown-up baby who couldn’t even voice his own needs. His autonomy had been reduced by the whole family. I can’t even fathom the suffering he must have been through.

I adjusted his medications to address his physical symptoms, ensuring that his pain and breathlessness would get better if he took these as instructed. We also made sure that the family could contact us through the emergency service line 24/7.

As for his suicidal thoughts, upon further history taking, it emerged that this was actually his second attempt to take his own life, so I consulted with the psychiatrist, hoping that it wouldn’t happen again.

One problem remained, though.

When his wife had rushed back from work and joined us, I took a deep breath and talked with Mr Yuth again.

“Mr Yuth, from what I gather, it seems that you have been through a lot. With your illness, your symptoms, unable to breathe normally, the pain, and also your… issues at home.”

“It must have been very hard for you to live through this. Before all of this happened, you were a totally independent man but not anymore. But I think that you’re very lucky.”

He looked at me incredulously. Has this doctor gone mad? His eyes spoke.

“You are very lucky because you are surrounded by the people who love and support you wholeheartedly. Just imagine about what would happen if you don’t have their help at all?”

“Well… it may have been a lot harder for me, doc. The food, toilet, coming to the hospital, and stuff.” Yuth reflected. His wife wore a faint smile and rubbed his arm lovingly.

“Just take your medications that I prescribed for now, ok? If you are still in pain I can give you some extra meds.” He nodded and asked for one pill right away. The man seemed tired so we let him rest for now.

Another family meeting

I asked all of his relatives to gather in a room and conducted family meeting again. I told them about what I had just heard from their father. Everyone was so shocked about this discovery.

“But we tried everything!!” His daughter exclaimed. “We did everything that we could! But dad won’t even open up to us! I tell him every day repeatedly that we will fight this together!!”

“And what was his response when you said ‘to fight’?” I asked.

She was taken aback by my question, unable to answer. Silence filled the room again since no one really knew what Mr Yuth’s wish was. They were all too busy “doing everything they could”.

“There were times when… when we said that we would fight together. He said that he didn’t want to fight anymore. Just let him go naturally, he said…” his sister recalled.

The daughter was now brimming with tears. His wife and son in law as well.

“I think that your father is a very great man. He endured all of this and kept them all to himself, hoping that one day, just one day, any of you may have noticed what he really wanted. Unfortunately, he may have kept it far too much and too long so that he tried to end it once and for all.”

“Then what can we do, doctor?” The daughter asked, now covered in tears.

“Dad mostly keep things to himself, doc” Chai also remarked. “If he didn’t like someone, he rarely opened himself to them at all. But he opened up to you after just a few minutes talk. How did you do that, doc?”

An ear to listen

I thought for a moment, not sure myself what was it that connected me with him.

“I listened to him, that’s all.”

After the long talk, we went back to Mr Yuth. He was now sitting, not so breathless nor in pain anymore. He smiled and waved at me, surprising the family yet again. They all said that it was the first smile they had seen for as long as any of them could remember.

Just like two sides of a coin, while some patients may have been neglected by their families, some, like Mr Yuth, may receive too much love and care from their loved ones. But is it a justified love? To turn blind eyes from everything, pouring all the love and care so much that it became an overdose? Do we care for a person as they want or as we want?

At the end of the day, the best care one could give may be just an ear to listen, after all.

Mr Yuth’s story is one of the many stories from Pal2Know project. The objectives of the project are to share inspiring stories and knowledge in those who are involved in palliative care in Thailand.

The stories and contents of knowledge are already published as a teaching material free of charge. More stories and practical knowledge will be printed and distributed nationwide later on.

Find out more at pal2know.thaps@gmail.com

From ehospice at http://www.ehospice.com/ArticleView/tabid/10686/ArticleId/14707/language/en-GB/View.aspx

Japan – Palliative Care Becoming the Norm

Palliative Care Becoming the Norm
A conscious change towards a new form of thinking

Translated by: APHN Volunteer, Weelic Chong 
Edited by: Mr Masami Otani, General Manager, Japan Hospice Palliative Care Foundation 

A Changed Definition

Cancer first became the top cause of death in Japan in 1981. Since then, it has remained in the top spot, with cancer now responsible for a third of all deaths in Japan. With the aging population, the number of cancer sufferers is expected to increase. However, improving treatment methods and an improved awareness of the importance of early detection have resulted in higher survival rates. Now, over 60% of cancer patients survive for more than 5 years. It has been said that Japan is arguably a “society that lives with cancer”.

Palliative care, as defined by the 1989 WHO standards, was the “Holistic care and support for patients who do not respond to treatments with the aim of curing their illnesses”. This had the tacit meaning of terminal care. In Japan some years ago, doctors who have diagnosed cancer in their patients do not often reveal this diagnosis. In 2002, the WHO definition was expanded to include the “patient and family’ for the “early assessment of bodily, psychosocial, spiritual problems with the goal of increasing the quality of life”. Currently, a concise definition of palliative care from the Japanese Ministry of Health, Labor and Welfare (MHLW) is “Alleviating the bodily and emotional pain associated with illness”.

In Step with Treatment

Himself a sufferer of malignant lymphoma, Shinsuke Amano is the director of a patient support group “Group Nexus Japan” based in Setagaya, Tokyo. Tenno reveals a response that patients and their family often face from their doctor during treatment. Patients complaining of unbearable pain and a desire to take up palliative care are often responded with “Palliative care is too early for you. Keep fighting the illness and bear with the treatment”. Families are often led to believe that palliative care necessarily equates to giving up on treatment.

With the shift in palliative care thinking, palliative care is now in step with treatments from the beginning of diagnosis.  With this, new misunderstandings may arise. The director of the Japanese Society for Palliative Medicine (JPSM), Toyoshi Hosokawa, who is also a professor at the Kyoto Prefectural University of Medicine, says “Alleviation of the pain from the cancer as well as the side effects from cancer treatment all fall under palliative care. The treatment that doctors provide is also one aspect of palliative medicine.”  The JPSM is increasing membership, especially targeting doctors who graduated between 2 to 5 years ago.

Japanese Budget and Medicine

Japan is also instituting a new anti-cancer program, and within this program, palliative care is set to carry a bigger role, with an emphasis on increasing palliative care access from the beginning of cancer diagnosis. Currently, plans are underway to incorporate palliative care centers into the budget.

From Nikkan Kogyo Shinbun

Barry Ashpole Media Watch: 6 April 2015 (#404)

An article from Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada). More reports can be found at IPCRC.NET

Euthanasia and China: The traditional Chinese moral perspective and its social justice implications

Asian bioethics reviewAsian Bioethics Review, 2015;7(1):43-61. This article begins by examining the Chinese relatively liberal stance on suicide. It explains the cultural forces that shaped traditional China’s interpretation of life, death and motifs that validate self-sacrifice. To elucidate the Chinese perspective, the article incorporates extensive comparison with Christian viewpoints. It then addresses “self-regarding” euthanasia cases where death is advanced as a measure to relieve personal affliction. Following this are descriptions of the “other regarding” category, where euthanasia is invoked as an altruistic act to benefit the collective. The article then argues that given China’s beleaguered public health system, there may be moral justification for some to waive their entitlement to life-prolonging treatment as a measure to curb excesses. It ends by contending that accelerating death, even when constricted by these exceptional instances, is not the favoured recourse. This is because the root causes of the current predicament stem from Beijing’s failure to administer equitable care. Instead of pursuing the legitimisation of euthanasia, the stronger ethical response is to reform China’s healthcare… http://muse.jhu.edu/login?auth=0&type=summary&url=/journals/asian_bioethics_review/v007/7.1.chai.html

Half-way Home for Paraplegic Patients

020415Adult Rehabilitation – A model halfway home project for Paraplegic patients was opened in Trivandrum Institute of Palliative Sciences (TIPS), Arumana Hospital, on the 24th of March 2015.

Funded by Department of Social Justice, Kerala, the project will house 4 paraplegic patients in a month, who have completed their acute care already. The physical, functional, psycho-social, sexual and spiritual rehabilitation of these patients will be done in the specially designed facility in TIPS. The faculty of TIPS will be supported by consultants in all disciplines. Here the patients on their way home will be trained so as to help them lead improved quality of life, with very less dependence on family and community. The model thus worked out will be submitted to the Department of Social Justice with the lessons learnt by the team along with other recommendations.

The bedroom, kitchen and toilet in the facility are disabled-friendly. The stay of an individual patient (with one relative) is for a minimum of two weeks and in special cases may exceed this, but not beyond three months. A questionnaire was developed to assess the patient on admission and on discharge. The findings and observations will be formulated as recommendations and will be submitted to Department of Social Justice periodically.

Read more articles from India in their April Newsletter here.

From Pallium India

Beneath Those Clothes

Written By Alvin Tng, Year Two Internal Medicine Resident, SingHealth Residency, Singapore

*All names have been changed to protect the privacy of the patient and family.

150415I first met Madam Ng*, who was in her forties, during my second month in Oncology in NCCS. It was my first day in a new team and Madam Ng was just another patient hoping to be discharged ASAP. Throughout the next two months, I would see her two to three more times as she came in and out of hospital.

She was very spunky and combative, always asking why she needed this procedure, that scan or when she could go home. But with each episode her energy took a nosedive in comparison to her rising Bilirubin levels. She became quieter, more reticent. She never lost her spunk, though. After asking her umpteen times if she had any pain, she would snap back with a feisty “like that lah!”

I eventually lost track of her as my posting ended and I moved on to other rotations.

Fate brought us back together three months later when I was assigned a review in Palliative Medicine. There she was, sitting on her hospital bed with a frown like Grumpy Cat’s. The clothes hung off her even thinner frame, which was paired with her biliary drain bag that had become her new companion.

Hi, Mdm Ng! Remember me?” I burst out, perhaps a little too chirpily.

Silence.

Aiyah, of course lah. Why you back here again?” She grunted, as I sat down to listen to her complaints.

The next day, Madam Ng was down in Radiology for a scan but I found her husband by her bed. Truly, they were a charming young couple but Madam Ng’s cancer had robbed her of her health and bestowed upon Mr Ng a greying hairline and extra worry lines on his forehead. I stopped and asked how he was. He looked mildly surprised. It was clear he was more used to talking about his wife than himself.

“You know, she used to dance?” He suddenly mentioned, a hint of a smile tugging at his lips. No, I replied, genuinely surprised.

Turned out she loved dancing in her free time, and was upset that her disease had robbed her of her health and everything she treasured in life. The conversation lapsed into a silence, as each of us, lost in our own thoughts, shaped our own mental images of Mdm Ng.

As healthcare professionals, we often fall into the monotony of the daily grind. Our patients get admitted, we write out a problem list, order bloods, order more antibiotics, order even more scans and then send them home.

More often than not, we forget that behind that blue or pink hospital baju is someone’s parent, sibling, child and a vibrant personality. We forget – or we actively choose to forget – that the new patient sitting in front of us is actually an active member of society before he came into hospital.

Proponents of holistic patient care would argue that we should actively try to know our patients beyond their medical conditions. Knowing their social background has many benefits – assessment of available home support helps in early discharge planning; connecting with  patients’ family improves family participation in patient care and makes discussion of sensitive topics such as end-of-life issues much easier; connecting with the patient also encourages compliance to medications and follow-ups.

On the other hand, naysayers would argue that we need to maintain a distance from being too involved with our patients . Not to mention with the huge patient load on call and in the clinics, it is near impossible to parcel out that extra five to ten minutes to properly sit down and get to know our patient better.

The answer is probably somewhere in the middle.

We need to address both the medical and social issues at heart. Getting to know the patient beyond his medical condition is just one step in the direction of holistic patient care. I think I can safely say that most of us healthcare professionals would like to engage our patients and know them better beyond their medical conditions.

Small steps in this direction would include improving the doctor-patient consult time. This is a fine balance between clinic resources, manpower, costs and patient load – an equation perhaps best left to the administrators.

For us on our part, the next time we see a new patient during our night call or clinic, or when we see our regular long stayer patient in the ward, remember and try to see beneath those hospital clothes – for in there, lies a unique individual..

Coming back to Madam Ng, a month after our last encounter, I chanced upon her obituary in the Straits Times. She had a Christian name, Maureen. And she looked very happy in her picture.

She had finally returned home. To a happier and pain-free place where she now belonged.

From Tomorrow’s Medicine

Palliative care mentoring guide published by the All Ireland Institute of Hospice and Palliative Care

The All Ireland Institute of Hospice and Palliative Care (AIIHPC) has published a ‘Mentoring guide for health and social care professionals who provide palliative care in a variety of settings’.

060415

The publication provides guidance to support the continued development of health and social care professionals working in palliative care.The Mentoring Guide is divided into three sections:1. Overview of mentoring, including mentoring in palliative care specifically
2. The mentor and mentee relationship
3. Guidance on resources contained in the publication.

The Guide includes sample documentation, such as mentoring agreements, planning checklists for both parties, a mentoring worksheet and an individual development plan…read more

Download the Mentoring Guide free of charge from the AIIHPC website.

Read more about mentoring in palliative care in an ehospice article by Palliative Care Works.

From ehospice 

Palliative care physicians&#039; attitudes toward patient autonomy and a good death in East Asian countries 

Journal of Pain & Symptom Journal of Pain and Symptom ManagementManagement | Online – 28 March 2015 – A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; while 7.4% of Japanese physicians agreed. Physicians’ attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important, and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. http://www.jpsmjournal.com/article/S0885-3924(15)00157-8/abstract

**Professor Tatsuya Morita has kindly made available the full manuscript for APHN members. Please log in here to read the full paper.

An article from Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada). More reports can be found at IPCRC.NET

SHC – LCPC Forum: Advance Care Planning: Care and Communication in Palliative Care

By Mr. Lawrence Wong, Senior Counselor of HOME Programme, AIC; Ms Sharon Ganga, Programme Manager of HOME Programme, AIC & Dr Rina Nga, Head – Medical Services, SCS Hospice Care

Summary of talk by: Dorothy Lim

In the first presentation, Mr Lawrence Wong expounded on the role of Advanced Care Planning in a home care setting and fundamentally, the need for Advanced Care Planning in the first place.

What is Advanced Care Planning (ACP)

Mr Wong defines ACP as a series of communications between healthcare workers and the patient, which involves understanding, discussing and communicating the patient’s healthcare preferences. Being an inclusive process, it involves the patient’s loved ones; and will not only help the patient but also their loved ones, in making informed decisions and future plans that would be aligned to the patient’s desires when the patient loses his/her ability to make decisions. It is a staged process based on the patient’s health conditions. During the ACP discussion, expectations and care choices are clarified with the patient. It is also a form of reassurance to their loved ones – that they are carrying out what patients truly want. Although it is still a challenge for family members to make tough decisions, it ensures that such decisions are in accordance to the patient’s wishes. Hence, the patient’s loved ones need not feel guilty or burdened while making such difficult decisions.

Role of ACP in Home Care Setting

Mr. Wong highlights that many people today suffer from chronic diseases but each patient’s illness trajectory varies vastly from others of different diseases. Due to the rapidly fluctuating conditions in patients, there is a high need to track the changes in their preferences for care throughout their sickness, to ensure the continuity of care when they are transferred from hospital to home care or vice versa.

A case study shared exemplified how the desire of care can fluctuate depending on the patient’s illness trajectory. This case was about an elderly man (73 years old) in 2012, who was suffering from Chronic Obstructive Pulmonary Disease (COPD) for 7 years. He had done his Advanced Care Planning (ACP) in 2011. When reviewed again in mid-2012, he stated that he wanted limited medical intervention when his prognosis is within days to hours and had no preference regarding place of death, as long as it is comfortable. But in October 2012, when his daughter saw him lying on the floor unconscious, she called the ambulance to take the patient to the A&E but did not take the case file along which contained the ACP report. Hence, being unable to recall her father’s ACP preferences when questioned by the A&E doctors, the patient was intubated. Upon being extubated, the patient’s ACP was reviewed again, and there was a change in his decision and he opted for active treatment instead when faced with life-threatening conditions (despite knowing that there was a higher risk of complications and lower chances of survival). But after a few days, his condition deteriorated and he was admitted into the Intensive Care Unit (ICU) and re-intubated, according to his updated ACP decisions – to seek active treatment. But after realizing he was unable to speak and express himself while being intubated and would die after extubation, his desires for care had altered once again. He insisted that he would rather be extubated and bid a proper farewell to his family than continue in a state of futility. With the family members included in the ACP discussion, it was decided for him to be extubated on the next day, allowing him to express his appreciation and spend his final moments with his family. After a few days he passed on peacefully.

Challenges of ACP

This case study and Mr Wong’s past experiences reveal the difficulty for counselors and doctors to discuss ACP and end of life issues with patients. Coupled with the constantly inconsistent desire for care, which varies with the patient’s condition, some patients may not admit that they are suffering from terminally-ill conditions. This is especially difficult for some elderly who are unable to access their condition based on the doctor’s report and refuse to accept their diagnosis when they can still move and live independently. There is a need to find out from the patient what their desires are. Since their end of life preferences will constantly change, ACP is an ongoing discussion that will be affected by one’s circumstances and perspectives at any point in their life.

Stages of an ACP Discussion

There are different stages of an ACP discussion for several groups of people – healthy adults, chronic diseased population and end-of-life population. In the first stage, a general ACP discussion is targeted for healthy adults. A decision maker has to be nominated and goals of care and treatment are considered, in the event of a serious neurological illness or injury. In the second stage, a disease-specific ACP discussion for the chronic disease population will determine the goals of treatments, in the event where complications that arise result in bad outcomes. In the third stage, a preferred plan of ACP is determined. It is a specific plan of care for the end-of-life population, who has a prognosis of less than 12 months, consisting of specific details such as the preferred place of death.

Role of Healthcare Workers

Healthcare workers hold complementary roles in ACP discussions. The patient’s counselor would be in-charge of exploring the meaning of hospitalization or death with the patient and facilitating a reflection of life, while the doctor would be assisting in clarification on understanding of diseases and medical interventions when required. After an ACP discussion is carried out, the patient’s preferred care choices are recorded and filed in a personal medical file at home. Family members are instructed to bring it along whenever a patient is admitted to the hospital.

In conclusion, Mr Wong highlighted that there are 5 key stages in any ACP discussion: to understand, to reflect, to discuss, to communicate and lastly, to document.

Recurrent Themes in ACP Discussions

The second speaker, Ms Sharon Ganga, a social worker, talked about recurrent themes she encountered in ACP discussions she experienced with her patients. She introduced the HOME programme as a holistic care for medically advanced patients, with a high number of end-stage renal failure (ESRF), end-stage heart failure (ESHF), and COPD patients.

The First Encounter

The first common emerging theme during ACP discussions in the HOME programme is the first encounter with patients and their incomplete understanding of ACP. The first step of raising the topic of the patient’s desired care in their last days was seemingly simple yet posed as a challenge for many counselors and doctors. It was viewed as a very negative topic, which was not beneficial to the patient’s emotional wellbeing. However, it is necessary to conduct such discussions as it plays a pivotal role in making life and death decisions for the patient at a later stage. The next step was to educate patients and their family as most people are still unaware of what ACP is and the purpose of conducting such discussions. The following step was to overcome barriers of resistance and denial among patients and their family, to get them to accept reality.

Story Narration

Another recurrent theme in ACP discussions is story narration by patients. This is important in building rapport and establishing trust with the patient. Patients are wounded story tellers who share their healing stories, chaotic journeys of losing control or even quest narratives where their illnesses led them to embark on spiritual journeys. Therefore, it is suggested that counsellors and doctors take time to listen to the patients’ journeys, which would help in strengthening the relationship with the patient.

It has been observed that patients who are extremely eager to pass on their values to next generation are generally more accepting of their condition and would take joy in simple pleasures in everyday life. Hence, they are better able to engage in more effective ACP discussions. There are also many patients who find meaning in their lives through religion and culture. When facing death, religion, spirituality or culture act as a coping mechanism to help patients come to terms with their illness. It will help ensure more effective ACP discussions. However, based on their religious, spiritual or cultural systems, care must be taken to ensure that customs are followed. For instance, many patients have concerns with using morphine due to religious beliefs, and have special requests for places of death or practices that must be adhered to. In some of the Chinese patients, they believe that dead bodies cannot be touched for 8 hours to allow the soul to leave the body.

Platform for Mending Strained Relationships

ACP helps to build relationships and is a platform for patients to mend relationships towards the end of their life. It aims to increase the quality of life for patients and increase a sense of assurance in caregivers.  Ms Ganga shared that many wounded relationships have been mended with ACP. An example given was of an elderly lady and her daughter, where ACP had improved the communication between both parties. The elderly patient dreaded going to the hospital and would always refuse to speak to her daughter whenever she was not feeling well. But after the ACP, the daughter knew her mother’s wish was to die at home comfortably and accepted her desires. Hence, whenever the elderly patient fell sick, she informed her daughter, who called a nurse to attend to her instead of sending the patient to the hospital. With the patient’s care preferences made known, the patient no longer hid her sickness from her daughter in fear of going to the hospital and dying there.

In the last presentation, Dr Rina Nga, the Head of Medical Services in SCS Hospice Care, re-emphasized the importance and the benefits of ACP. She emphasized that it is essential to know the patient’s preferences on dying and as well as the process of dying, in order to cater to their needs.

Problems Without ACP

Before the ACP was institutionalized, there were inconsistent recording of patient’s wishes by different nurses and doctors, each asking the same patient different questions about their care preferences. This can be a problem especially when the patient’s condition deteriorates and s/he is unable to respond, making it difficult to know what the patient really wants. Also, depending on the relationship with the patient, the level of communication with the patient varies, hence making the documentation of the patient’s wishes variable from different nurses and doctors. Being an official document, there is more impetus to conduct such uncomfortable yet necessary conversations. It is a lasting and universal document, with a common language and standardized questions, so as to allow consistent documentation of all patients’ desires for care.

In conclusion, while there are many barriers that need to be overcome in an ACP discussion, ACP is necessary to ensure that the care given to patients is aligned to their wishes.

Edited by: Lien Centre for Palliative Care

International organisations call on UNAIDS to include palliative care in new global strategy

160415The Worldwide Hospice Palliative Care Alliance (WHPCA) and the International Children’s Palliative Care Network (ICPCN) have submitted a statement to UNAIDS as part of the consultation on the UNAIDS 2016–2021 Strategy, calling on UNAIDS to include palliative care as an essential component of care and support for children and adults at regional and global levels.

 Read more to find out answers to the following questions:

  • What is happening and why?
  • What can palliative care offer the consultation?
  • Why and how is palliative care being ignored in the global response to HIV and AIDS?
  • What are the results of this marginalisation?
  • What can we do?

For more information about UNAIDS, click on their UNAIDS website.

From ehospice