Spiritual care in palliative care: Lost case

Sander de Hosson, pulmonary specialist at WZA (Wilhelmina Hospital Assen), The Netherlands

Sander de Hosson

Sander de Hosson

My initial encounter with palliative care took place during my electives. On the ward was a 60-year-old woman with an extensive cutaneous and pulmonary metastatic melanoma as well as a brain metastasis. The experimental therapy that she had received had already been stopped some time ago because of unacceptable side effects. Due to a seriously progressive neurological presentation, the performance score was very mediocre. When the ward doctor scrolled through images of her brain and displayed the numerous large and small brain metastases the supervisor’s conclusion was clear. ‘Lost case.’ Later, when I entered the patient’s room together with the ward doctor, I saw the patient for myself. Atactic, dysarthric, paretic. A much better word is dramatic. Dying.

As we talked to her we noticed, more than anything else, an overriding sense of fear. Fear of death and, above all, fear of the process of dying. A fear that was also partially elusive. I later see the word ‘Oxazepam’ on the prescription written out in the consultation room.

In his excellent treatise on this subject, Atul Gawande, a surgeon from Boston, formulated five questions which ought to be asked of any patient with a life-threatening, incurable affliction:

  1. What do you know about your illness and how acute is it?
  2. What are your fears and insecurities about the future?
  3. What are your goals and priorities in life?
  4. What are you prepared, or not prepared, to give up or endure?
  5. What does a good day in your life look like?

“I was intrigued by the contrast with the other way the patient had been approached.”

Asking these questions, but above all listening to the answers, is an essential pointer for somatic, psychosocial and existential care, which can and perhaps must be provided. Drug-based intervention usually plays a subordinate role in this.

handsHappily, in the case of this patient, the decision was taken to consult a spiritual carer in connection with the clear existence of existential issues. Her visit to this patient was a valuable experience for me. I was intrigued by the contrast with the other way the patient had been approached. The spiritual carer did not stand up but sat down instead. She used the available time primarily to listen, rather than subjecting the patient to a barrage of questions. Quite frequently no one said anything. Such a visit ought to be an obligatory part of the training of every house officer and junior doctor.

I recently read a scientific research paper that stated that one in three patients who are in hospital at any one time in the United Kingdom die within a year. In our daily hospital practice we often work on the welfare of patients who will no longer be around in a year’s time. Often it is not possible to work out who these patients are, but our clinical intuition can sometimes give us an idea. ‘Advance care planning’ is not a hollow shell.

“Clearly, it is essential that any care provider who treats patients with incurable oncological diseases and organ failure has an awareness and competency in palliative care.”

Now that oncological science is producing impressive results along previously inaccessible routes, the duration of the palliative phase will also increase to match the corresponding increase in somatic and existential problems. The development of palliative care in the Netherlands has gone beyond the pioneering phase. Clearly, it is essential that any care provider who treats patients with incurable oncological diseases and organ failure has an awareness and competency in palliative care.

After a series of inspiring talks with the spiritual carer I noticed that, during the days before her death, the fear had disappeared from the patient’s eyes. She was no longer a ‘lost case’. There was a great deal still to gain.

Links

  • Sander de Hosson writes regularly for Agora (Policy Support Centre that promotes a palliative approach into healthcare and welfare services). Read more of his posts here.
Posted in SPIRITUAL CARE | Tagged | Leave a comment

Polypharmacy in an inpatient hospice setting – exploring the patients’ views

Jennie Pickard, Specialist Palliative Care Pharmacist, St Ann’s Hospice, Heald Green, Manchester, UK, explains the background to a longer article in the May/June edition of the European Journal of Palliative Care.

Jennie Pickard

Jennie Pickard

Over the years I have had numerous discussions, with my colleague, Dr Alison Phippen, about the growing number of medications that hospice inpatients are prescribed. Looking back to when I first started working in palliative care I realise how much has changed.

As clinicians, we have a unified desire to help patients. Obviously, medication can help tremendously with symptom management. However, we need to stop and think . . . “How much does the actual burden of taking medication impact on this person’s life?” In practice, it often appears easier to prescribe than to de-prescribe.

Polypharmacy can be defined as the use of multiple medicines by one person. In the recent literature polypharmacy, in general, has been discussed, 1 however, very little about polypharmacy relating specifically to palliative care has been published. As part of the Improvement Science for Academics (IS4Ac) programme delivered by the Manchester Academic Health Science Centre (MAHSC), we carried out a larger piece of quality improvement work to map polypharmacy at the hospice. We clearly highlighted a problem but could we be certain that patients perceived it as such? After all, perhaps patients would prefer symptoms to be controlled at any cost.

Obtaining patients’ views was therefore important. We investigated how satisfied patients are with their medication. Would they like to take fewer medicines? Do they feel their medicines make them tired? Do they still have some pain despite taking analgesics? Do they find medicines difficult to take or dislike the taste? Does taking medication interfere with their day?

Patients who were able and agreed to take part answered a series of questions in a face-to-face interview. This was repeated six times over a three-week period. This meant some patients would repeat the questionnaire but it was felt that their opinions might change due to changes in their medication regime or clinical condition.

The results showed the majority of patients were satisfied with their medicines (79% of completed questionnaires); however when questioned further, 87% of completed questionnaires indicated the patient would like to take fewer medicines.

The hospice admission documentation now includes a prompt to ask patients how satisfied with their medicines they are. Also a leaflet – Are you taking a lot of medicines? – has been produced. We aim to create opportunities for patients to discuss their medicines with the possibility of reducing them where appropriate.

Further work investigating how polypharmacy in palliative care can be improved is ongoing at the hospice.

Reference

Duerden M, Avery T, Payne R. Polypharmacy and medicines optimisation. Making it safe and sound. The King’s Fund Report, 2013.

EJPC23.3coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, Polypharmacy in an inpatient hospice setting – exploring the patients’ views, by Kathleen Connors, Jennie Pickard, Alison Phippen, Jan Codling, Dai Roberts and Samantha Kay, published in the May/June 2016 edition of the European Journal of Palliative Care (vol. 23.3).

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care, Medicine | Tagged | Leave a comment

Palliative care training in Rwanda: Working together to effect change

Julie McCarthy, Specialist Palliative Care Pharmacist Prescriber and Dr Victoria Smart, General Practitioner and Hospice Doctor at Mary Stevens Hospice, UK. In this background post to their longer article in the May/June edition of the European Journal of Palliative Care, they explain how individual health professionals and the forming of personal links are an integral part of supporting the development of global palliative care.

 

Julie McCarthy and Victoria Smart

Left to right: Victoria Smart and Julie McCarthy

 

Our narrative begins in November 2013 when Victoria, a ‘jobbing’ general practitioner and Mary Stevens hospice doctor, met Dr Christian, a palliative care champion in Rwanda, during a THET (Tropical Health & Education Trust) sponsored mentorship visit. On returning to the UK this relationship was developed through email and Skype resulting in Christian accepting an invitation to visit.

During this visit, Christian was introduced to the hospice’s multi-disciplinary team. His initial reaction to Julie, hospice specialist pharmacist, was uncharacteristically cold; he made it clear that the relationship between pharmacist and doctor in Rwanda is sometimes one of conflict and not that of the mutual support and collaboration seen here. He visibly relaxed as he chatted to Julie discussing concepts around palliative care pain management. It became clear that in Rwanda, unlike other developing countries, it was not a lack of availability that was the barrier to morphine use but a lack of experience and confidence.

Christian returned to Rwanda and Skype talks continued, Christian introduced Jean Claude, a pharmacist overseeing the manufacture and distribution of morphine oral solution within Rwanda. During these discussions, experiences and ideas were shared and an easiness of conversation evolved. It was during one such discussion that Julie and Victoria were met with the announcement that “…you must come to Rwanda and teach our pharmacists about opioids!”

It was unfamiliar territory for unassuming individuals who are certainly not part of the global palliative care education network, nor in the habit of taking international travel, except for holiday! However, by making friends and maintaining relationships, two UK health professionals were being invited to Africa to prepare and deliver opioid training. The new Rwandan friends were very persuasive, and with the support and sponsorship of THET and Mary Stevens Hospice backing, arrangements were made.

With around six weeks to prepare, evenings and weekends were spent brainstorming innovative ways to engage African colleagues. We prepared several education sessions: from the use of simple games and physical props, to quizzes and small group case discussions, and a patient recorded a video about her experience of morphine helping life with a palliative diagnosis, During the visit, we delivered two training workshops, the results of which were significant and are detailed in our article in the European Journal of Palliative Care.

We are delighted to say that ongoing evaluation within Rwanda shows the use of morphine for pain management is increasing and later this year we will return to Rwanda as part of a second THET mentoring project.

Whilst large formulated projects and teams are vital in promoting good palliative care around the world, the role of the individual health professional and the forming of personal links has to be an integral part. Many of us have skills that can contribute to this important work. We hope by sharing our experience we might encourage others, as we have shown that from chance beginnings positive change can occur.

EJPC23.3coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, Palliative care training in Rwanda – Working together to effect change, by Victoria Smart and Julie McCarthy, published in the May/June 2016 edition of the European Journal of Palliative Care (vol. 23.3).

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Links

  • THET – a global health organisation that trains and supports health workers through health partnerships, enabling people in low- and middle-income countries to access essential healthcare.

 

 

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Preferences regarding disclosure of prognosis and end-of-life care

Dr Waleed Zafar, Dr Haroon Hafeez and Dr Aasim Yusuf, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan, explain the background to their longer article selected as Editor’s Choice in the July edition of Palliative Medicine.

Dr Waleed Zafar

Dr Waleed Zafar

Arguably, one of the most impactful Mughal miniature paintings is ‘The death of Inayat Khan’ by Balchand. 1,2 It is a strikingly realistic depiction of a man in an advanced stage of illness (possibly cancer). A fascinating aspect of this painting is the way it captures not only the subject’s emaciation, pain, and anguish, but also the care with which he sits propped up in a clean and comfortable bed. The painting evokes a strong feeling of empathy with the subject and forces one to consider what must be going on in his mind. We refer to this painting because it is an unusually frank look at a person approaching his natural death to come out of a cultural milieu that was, and remains, reticent on this topic.

Dr Haroon Hafeez

Dr Haroon Hafeez

Dr Aasim Yusuf

Dr Aasim Yusuf

In our work caring for cancer patients at Shaukhat Khanum memorial cancer hospital and research centre (SKMCH&RC) in Lahore, Pakistan, we remain constantly aware that there is very little research from our part of the world on what cancer patients’ expectations are from palliative and end-of-life care. SKMCH&RC is the only cancer specialized hospital currently operating in Pakistan, and one of very few centres that offers specialist palliative care in the country. Annually, we treat around 7,000 new cancer patients and provide palliative care to around 1,600 patients.

Govardhan. The Dying Inayat Khan, ca 1618, Boolean Library, Oxford (Wikimedia Commons)

Govardhan. The Dying Inayat Khan, ca 1618, Boolean Library, Oxford (Wikimedia Commons)

In July 2013, we started discussing the need for a study to better understand two related issues. The first was how to effectively communicate with our patients and their families regarding disease prognosis. Specifically, we wanted to learn how detailed our patients want us to be in discussing disease prognosis especially since a large proportion of our patients have low literacy levels. The second issue was to try to understand some of the key expectations that our patients have regarding end-of-life care. We also wanted to explore if these preferences regarding communication and care varied by patients’ demographics, type of cancer, and personality characteristics (self-efficacy, locus of control, and religiousness).

Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan

Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan

We reviewed available instruments developed to measure some of these domains but found that none of them fitted our needs. So a major undertaking was the development of the questionnaire in Urdu. At the outset, we decided that it was better to design a single instrument with multiple domains that addressed the key themes that we wanted to explore and to supplement our findings from the questionnaire with in-depth interviews with patients, their families, and palliative nurses. Such a mixed-methods study has provided us with very rich data that we are in the process of analyzing. This study presents the results from the quantitative portion of our research project.

We hope that our study will contribute to the growing literature on tailoring palliative care to specific patient needs and expectations. We also hope that Palliative Medicine will continue to offer us, its readers, opportunities to understand how palliative care is developing and taking root in lesser-developed parts of the world.

References

  1. Thackston, WM (translator). The Jahangirnama: Memoirs of Jahangir, Emperor of India. New York: Oxford University Press; 1999: p. 279-280.
  2. Smart E. The death of Inayat Khan by the Mughal artist Balchand. Artibus Asiae 1999; 58: 273-279.

Read the full article in Palliative Medicine
This blog post relates to the longer article, ‘Preferences regarding disclosure of prognosis and end-of-life care: A survey of cancer patients with advanced disease in a lower-middle-income country’ by Waleed Zafar, Haroon Hafeez, Arif Jamshed, Mazhar Ali Shah, Ainul Quader and M Aasim Yusuf, Palliat Medicine July 2016 vol. 30 (7) 661-673. Published online before print January 14, 2016, doi: 10.1177/0269216315625810.

Download your free copy of this month’s Editor’s Choice article from the EAPC website here.

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

 

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH | Tagged , | Leave a comment

Physiotherapy: Improving quality of life for palliative care patients

Cipla Palliative Care and Training Centre in Pune, in the state of Maharashtra in India, has provided free inpatient and home care for cancer patients and their families since 1997. Dr Mugdha Vaidya, the physiotherapist at Cipla, describes one of the weekly case presentations.

Dr Mugdha Vaidya

Dr Mugdha Vaidya

Mr M.S. aged 40, was diagnosed with squamous cell carcinoma of the tongue and admitted to our centre in February 2016. Earlier, in 2014, he was operated on for hemiglossectomy with primary reconstruction of the tongue, followed by chemotherapy and radiation. In January 2016, he received further surgery for external carotid artery ligation and marginal mandibulectomy. On being admitted to our centre, Mr M.S. complained of breathlessness, generalised weakness and right upper limb weakness.

On examination, we found that the patient had a flexed neck, slightly rounded shoulder and forward flexion of the upper back. During the first few days of his admission, the patient was dysphonic, that is breathless on minimal exertion, and thus able to walk only for a short distance. His range of movement was normal for a lower limb whereas his right upper limb was fully compromised. There was right upper limb monoparesis that was probably due to brachial plexus involvement (either resulting from the disease process or from surgery). He could only move his fingers. As per the activities of daily living assessment (ADL), much of the patient’s ADLs were affected. He was not able to feed himself, brush his teeth or comb his hair due to restricted right arm functioning.

As there was no significant complaint of pain, we started physiotherapy exercises soon after the patient’s admission. As finger movements were intact and forearm muscles were functional, we introduced therapeutic sponge balls to strengthen the forearm muscles and also gave passive wrist, elbow and shoulder exercises, a small amount of weight-bearing exercises along with postural correction. Due to this sustained introduction of physiotherapy, the patient’s shoulder complex muscles and bicep muscles started responding. Slowly, along with his earlier exercises, we replaced his passive range of motion (ROM) with active assisted ROM exercises. Quadriceps strengthening exercises were added for lower limb strengthening. Mr M.S. started to practise writing the alphabet holding a pen. The next four days saw him completing full ROM of shoulder and elbow. Gradually, we introduced strengthening exercises to manage his daily activities.

By the end of his stay at our centre, Mr M.S. was able to feed himself, brush his teeth and comb his hair using the same right arm, and we observed him practising his signature with a wide smile on his face.

Cipla Palliative Care and Training Centre in Pune

Cipla Palliative Care and Training Centre in Pune

Lessons learned

  • Patient cooperation and adherence increase the impact of intervention
  • The intervention needs to be paced according to the patient’s comfort.

We feel confident that in this case, a physiotherapy intervention achieved an improved quality of life for our patient, which is one of the main goals of palliative care. But it was equally due to the patient’s own motivation, and perseverance with the prescribed exercises, that enabled him to get back what he thought was lost forever.

Links and resources

  • Potential and Possibility: Rehabilitation at End of Life: Physiotherapy in Palliative Care, Taylor, R. Simader and P. Nieland (Eds.), Elsevier (Urban & Fischer, München), 2013. (Published in English and German).
Posted in NATIONAL & INTERNATIONAL REPORTS, PATIENT & FAMILY CARE, Therapies | Tagged , , | Leave a comment

What do Seville, Limerick and Bradford have in common?

The cities of Seville, Limerick and Bradford are set to become recognised by Public Health Palliative Care International as the first three Compassionate Cities in the World.

Professor Allan Kellehear (Bradford University, UK), Dr Emilio Herrera-Molina (New Health Foundation, Seville, Spain) and Dr Kathleen McLoughlin (Maynooth University / Milford Care Centre, Ireland) are spearheading this development in their respective countries. Here, they explain how they are working with the Mayor and Council in each city.

Prof Allan Kellehear © Victor De Jesus

Prof Allan Kellehear
© Victor De Jesus

Professor Kellehear explains “Serious personal crises of illness, dying, death and loss may visit any of us, at any time during the normal course of our lives. A compassionate city is a community that squarely recognises and addresses this social fact.”

Led by local government, through The Mayor’s Office, Compassionate Cities publicly encourage, facilitate, support and celebrate care for one another during life’s most testing moments and experiences. Such experiences are especially linked to life-threatening and life-limiting illness, chronic disability, frail ageing and dementia, grief and bereavement, and the trials and burdens of long-term care.

Dr Kathy McLoughlin

Dr Kathleen McLoughlin

Dr McLoughlin says “The cities of Seville, Bradford and Limerick will do this by developing a Compassionate City Action Plan with specific actions aligned to 12 social changes outlined in the Charter.”

The actions taking place in Seville, Bradford and Limerick will include:

  • Creating an incentives scheme to encourage, celebrate and highlight creative compassionate organisations, events, and individuals.
  • Development and roll-out of annually reviewed policies or guidance documents for dying, death, loss and care in schools, workplaces and trade unions.
  • Establishing dedicated groups for end-of-life care support in places of worship.
  • Setting up community development programmes involving local area citizens in end-of-life care activities and programmes in hospitals and nursing homes.
  • Hosting annual exhibitions on the experiences of ageing, dying, death, loss or care in the cities’ museums and art galleries.
  • Holding an annual peacetime memorial parade/ceremony representing the major sectors of human loss outside military campaigns.
  • Publicly showcasing in print and in social media, local government policies, services, funding opportunities, partnerships, and public events that address ‘compassionate concerns’ associated with living with ageing, life-threatening and life-limiting illness, loss and bereavement, and long-term caring.
  • Working with local social or print media to encourage an annual city-wide short story or art competition that helps raise awareness of ageing, dying, death, loss, or caring.
  • Supporting the development of plans for end-of-life care, loss and bereavement in conjunction with organisations representing vulnerable groups, e.g. indigenous travelling communities, homeless, imprisoned and immigrants.
Dr Emilio Herrera

Dr Emilio Herrera-Molino

Dr Emilio Herrera-Molina, leading Seville to become recognised as the first Compassionate City in Spain, explains: “It is a process that takes time, and the development of a strong relationship with both citizens and the council is important so that a meaningful action plan can be developed, that responds to the needs of the city.” Each city has a formal agreement in place with their respective Mayor and significant interest has been generated through public meetings and existing Compassionate Communities Projects. On October 7th 2016 Limerick will host an International Compassionate Cities Summit and launch their action plan for the next two years.

Find out more . . .

Save the dates

  • International Compassionate Cities Summit, 7 October 2016, Limerick, Ireland; email compassionatecp@milfordcc.ie to book a place.
  • The 5th International Conference of Public Health Palliative Care International will be held on 18-20 September 2017, Ottawa, Canada. Check website for updates.

We hope to publish more on the subject of Compassionate Cities in the future.

Posted in ADVOCACY & POLICY | Leave a comment

Are we ageist?

Anna Lloyd, Research Fellow, St Columba’s Hospice, Edinburgh, and Scott A Murray, St Columba’s Hospice Chair of Primary Palliative, Primary Palliative Care Research Group, The Usher Institute, University of Edinburgh, UK, explain the background to a longer article published in the May/June edition of the European Journal of Palliative Care.

Scott and Anna

Prof Scott Murray (left) and Dr Anna Lloyd

When people die at the end of a long life having lived with frailty for a number of years no one is surprised. They are often considered to have ‘had a good innings’. End of Story! However, this was the beginning of Anna’s story in academic research. She conducted serial interviews with frail, older people, their family members and, where possible, professionals involved in their care. “Where possible”, is a telling phrase as many frail, older people were unable to nominate a health or social care professional who was closely involved in their care, and certainly older people are underserved in terms of provision of palliative care services.

In the past few years we, at the Primary Palliative Care Research Group at Edinburgh University, have completed a number of longitudinal qualitative studies looking at the experiences of various people with cancer, organ failure and frailty in their last year of life. Bringing this work together, we first considered how people might tell different stories about their circumstances. We found that narratives were shaped according to whether someone was approaching the end of life with cancer, organ failure or frailty. The narratives brought to our minds the metaphor that one ‘dances with death’. However, the ‘dances’ seemed to be at a different pace. To put it another way, people with organ failure, cancer and frailty ‘danced with death’ but to different tunes (See a previous article on the EAPC Blog, where we discuss how we can provide good end-of-life care for everyone, whether their last dance is a fast Scottish reel, a tango or a slow waltz).

However, if we can relieve suffering through good palliative care, by metaphorically turning down the volume of the music accompanying the ‘dance of death’, why do we tend not to do this for older people? Why does the volume of the music remain high for them? Is this simply a question of ageism?

To consider this question, we obtained a small grant from Marie Curie to bring together the findings from four qualitative PhD studies. These studies considered if the experience of palliative care services of older people with glioma, bowel cancer, liver failure, and those living with frailty, differed from their younger counterparts.

Lack of palliative care seemed to relate less to ageism and more to difficulties in recognising when older persons might die. To illustrate, it was, in fact, younger people with liver failure who were less likely to receive palliative care input than older people with liver failure because healthcare professionals did not consider the possibility of their deaths. Palliative care, both generalist and specialist, was evident when dying was recognised by professionals regardless of age. Maybe we are so accustomed to the ‘normality’ of dying in old age that we do not notice when older people have begun to ‘dance with death’, so we do not think to look at palliative care as an approach to relieve suffering.

EJPC23.3coverRead the full post in the European Journal of Palliative Care
This post relates to a longer article, Why do older people get less palliative care than younger people?, by A Lloyd, M Kendall, E Carduff, D Cavers, B Kimbell and S A Murray,  published in the May/June 2016 edition of the European Journal of Palliative Care (EJPC). (vol. 23.3).

You can also now download the full article free of charge from the website of the Primary Palliative Care Research Group at Edinburgh University.

If you have a web-based subscription to the European Journal of Palliative Care you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online. click here to subscribe online.

Links
The Primary Palliative Care Research Group at Edinburgh University.

Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care, RESEARCH | Tagged | Leave a comment