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

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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.

Finding hope on the edge of life

The New Paper – Singapore | Take a step into the lives of four people. A woman with a degenerative condition, a young man stuck with stage four cancer, a nurse and a medical social worker who help the dying.

Take some time to read their stories. Click here to start the journey.

THEN THE NEXT STEP: Help to spread the word by sharing this so more people can know about palliative care.

 

Using morphine to stay alive

From Pallium India Newsletter

Zubair had intolerable pain from what had been diagnosed as giant cell tumor. 3 step-wise amputations later, he was in agonising pain – like needles being stabbed into him all the time.
He lost his job.
He lost his home.
He had to send his children to an orphanage.

In 1994 he was started on morphine. He has to take it even now.
But today, he is earning. He works all day, still on morphine.
He brought his children back from the orphanage. They had an education and are grown up men and women now, earning for themselves.

An estimated more than 75 per cent of the world’s population, or 5.5 billion individuals, have limited or no access to treatment for moderate to severe pain, according to a report by the UN International Narcotics Control Board – the body charged with the implementation of the UN drug conventions. Help us share this video to let more people know about the need for pain relief for people like Zubair.

Story about Paediatric Palliative Care shared on China television programme

Republished with permission from Butterfly Children’s Hospice, China

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Community Hero is a CCTV documentary program, which supports public welfare projects and promotes community action. As a nominee, Naomi  shared the story of Butterfly Children’s Hospices on Chinese television.  Ju Ping, a famous Chinese children’s television presenter, visited Butterfly Home with a television crew. Naomi introduced her to some of our staff and our amazing children, and spoke from her heart about the children’s needs and their great courage. Ju Ping also joined Naomi at Hunan Normal University Kindergarten fund-raising market. Naomi’s role often takes her out into the community, where she works incredibly hard fund-raising and educating.

Later Naomi led thousands of volunteers in a dance expressing hope for creative solutions to public welfare concerns.  After sharing her story, answering questions and being evaluated by judges, Naomi won the Community Hero vote, and was awarded 300000 RMB for the work of Butterfly Children’s Hospices.

We’re so thankful for all the hard work she put in to make this happen.  It’s wonderful to receive such a tremendous donation, and it was also fantastic to have a story about children’s palliative care shared on national television. Many people are not aware of the pressing need for specialist children’s palliative care, and this was an amazing way to start that conversation in homes all over the country. Thank you Naomi, and thank you to everyone from the Community Hero show!

People in pain – calling for improved global access to controlled medications

This article originally appeared in ehospice

Mrs Thakur* went to a government hospital with an 8cm cancerous lump in her breast. The doctor she saw told her the cancer was too advanced and sent her home with a prescription of paracetamol, saying: “There is nothing more we can do.”

Her husband found out by chance about a palliative care clinic in the area. He visited the healthcare staff there, saying his wife could not come because she was in too much pain. The doctors gave Mr Thakur some painkillers from the clinic, and arranged a home visit for the following week.

Palliative care is an approach which cares for people with life threatening or life limiting illness and their families. Palliative care teams address physical pain and symptoms, as well as offering social, psychological and spiritual care.

Mrs Thakur was only 30 years old, suffering from advanced breast cancer. She was in so much pain that she could not sit up, sleep, eat, or drink. The palliative care doctor gave her an injection of a painkiller, antiemetic, and sedatives, which he used as a substitute for morphine.

In Kolkata, India, where the Thakurs live, and in much of the rest of the world, morphine and other opioid pain medications are very difficult to access. This is because of regulatory barriers such as unduly restrictive laws, attitudinal factors such as concerns about addiction and reluctance to prescribe or stock these medicines, or insufficient training for health professionals (See WHO, 2011).

As a result of these barriers, each year over 18 million people around the world die in pain without access to essential medicines (WHPCA). Mrs Thakur’s doctor was not able to give her morphine to help relieve her pain, even though this medication is safe, cheap and effective.

In India, certain major hospitals stock morphine, but often people with – sometimes advanced – diseases such as cancer have to travel many miles to access this essential pain medication. If a doctor is practicing privately, the licensing is very complicated and people are left without proper pain management.

In a report released this year, the International Narcotics Control Board (INCB) recognised that around 5.5 billion people still have limited or no access to medicines containing narcotic drugs, such as codeine or morphine, leaving 75 per cent of the world population without access to proper pain relief treatment.

Around 92 per cent of morphine used worldwide is consumed in countries in which only 17 per cent of the world population lives: primarily the United States of America, Canada, Western Europe, Australia and New Zealand. These countries may be faced with the opposite problem of opioid dependence syndrome and illicit use of these medications intended for pain relief, although this is very rare outside the US.

Dr Hannah Fox, a visiting British doctor who attended the consultation with Mrs Thakur, said: “These situations are incredibly sad. Before we arrived, Mrs Thakur had not taken any pain relief. Seeing that level of suffering is really shocking.

“The United Kingdom has the National Health Service that is currently free to all and a network of charitable hospices. As a result, you would not see a young woman dying of cancer without any support. Cases such as this illustrate why palliative care and access to morphine is so important.”

In April this year, the General Assembly of the United Nations will meet in a Special Session to discuss “the world drug problem.” In the past, the issue of access to essential pain relieving medications such as morphine has been overshadowed by a fervent campaign to stop the trade of illicit drugs through legal action.

The Single Convention on Narcotic Drugs was drawn up and signed by UN member states in 1961. This document calls for both the halting of trade in illicit substances and the need to ensure adequate access to these medicines for medical use.

However, in the decades since the adoption of the Single Convention, the need for access to controlled substances for medical use has been sidelined as the infamous ‘War on Drugs’ has led to the creation of national laws and policies, in excess even of the Convention guidance, which restrict access to all narcotic substances, harmful drugs and helpful medications alike.

Inadequate access to pain relieving medications contradicts the notion of article 25 of the Universal Declaration of Human Rights, including the right to medical care, which also encompasses palliative care.

Dr Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance, said: “We call upon the UN General Assembly to ensure that there is balance between the medical use of controlled substances and prevention of misuse. Lack of access to pain relief is a global crisis.”

For people like Mrs Thakur, hope rests on the decisions made and actions taken by the United Nations member states to improve access to essential pain relieving medications.

Health must be a central consideration in the global response to the world drug problem so that people in serious pain can access the medications they need, no matter where in the world they live.