By Professor Peter Hudson
Improving the quality of palliative care provision requires collaboration. I am very fortunate to be involved (via my part time role at Queen’s University, Belfast) in an exciting new initiative called the “All Ireland Institute of Hospice and Palliative Care” (AIIHPC).
The AIIHPC is an all island organization, working with the two jurisdictions of the Republic of Ireland and Northern Ireland, to improve the experience of supportive, palliative and end of life care for these populations.
AIIHPC is made up of a Consortium of twelve partner organizations who recognized the opportunity that a collaborated, coordinated approach to palliative and end of life care development could bring. The Consortium partner organizations are a mix of health agencies and universities and include Dublin Academic Medical Centre (DAMC); Mare Curie Centre, Belfast; Milford Care Centre, Limerick; Northern Ireland Hospice; Our Lady’s Hospice and Care Services, Dublin; Queens University, Belfast; St. Francis Hospice, Dublin; St. James’s Hospital, Dublin; Trinity College, Dublin; University College Dublin; University of Limerick; and University of Ulster.
AIIHPC is working in three interlinked areas of Education, Research and Policy and Practice and is the only organization on the island that brings these three key work areas together. Leading the team at the Institute is Director, Paddie Blaney, who also acts as Head of Policy and Practice, along with Head of Education, Dr Michael P.Connolly and Head of Research, Dr Sonja McIlfatrick.
AIIHPC has also enlisted the direct support of international collaborators, many of whom have been active in supporting the Institute’s work to date. AIIHPC is keen to develop international collaborations and we seek to make a global contribution to the development of palliative care.
More detailed information on our work programs, partners and collaborators is available on our website www.aiihpc.org
Professor Peter Hudson is Director of the Centre for Palliative Care (St Vincent’s Hospital and Collaborative Centre of The University of Melbourne, Australia), Professor at The University of Melbourne and Professor of Palliative Care at Queen’s University, Belfast (UK). His bio may be found at: https://hospicecare.com/bio/peter-hudson
By Eric L. Krakauer
On a recent working trip to Vietnam, I spent a day with the staff of the Department of Palliative Care at the Ho Chi Minh City Cancer Hospital (HCMCCH), Vietnam’s busiest cancer center. In 2008, the hospital had no palliative care services, only the resolve of its leaders to respond to the suffering of the 45,000 inpatients and 45,000 outpatients who receive care there each year. Encouraged by the Ministry of Health’s palliative care initiative, the HCMCCH opened a small Palliative Care Unit that summer. In 2011, it opened a Department of Palliative Care that includes a 10-bed inpatient ward, an outpatient clinic, and home care services. Last month, I planned to see how things were going and offer my help with any clinical or logistical questions. Assisted by friends from Harvard and San Diego, I have had the privilege of providing ongoing training to the Department’s clinical staff, so I already knew well their enormous dedication, skill, and ingenuity. But my pride and joy mounted throughout the day.
The day began with the Department’s weekly multi-disciplinary team meeting. Oncology residents on their required palliative care rotation present the medical aspects of their patients, and then the patient’s nurses provide a concise but thorough psycho-social history. Comments and suggestions are added by the attending physician, by the Department’s chief nurse, and by the Department’s newly hired clinical psychologist. The result is a superb bio-psycho-social portrait of each patient and consistently thoughtful and comprehensive plan of care. After all patients have been discussed, and before walk-rounds, one resident gives a prepared 15-minute update on some aspect of palliative care. Assessment and treatment of pressure ulcers was that day’s topic.
After lunch, I accompanied one of the home care teams on a home visit. Our patient was an elderly man with advanced lung cancer, metastases to bone, and paraplegia from spinal cord compression. Because of concern by the team that the patient’s spouse might be clinically depressed, the team’s psychologist came along. When we arrived at the patient’s home, the psychologist met with the spouse and one of their children while the nurse and physician spoke with and examined the patient. His back pain was well-controlled, but he was short of breath, nauseated, and not sleeping well. Physical examination revealed his known pressure ulcers and a massively distended bladder. Before cleaning and dressing the patient’s wounds, the nurse placed a urinary catheter that she carried in the home-care kit that is stocked each day at the Department with essential palliative medicines and supplies. Not surprisingly, the patient felt much better after the team’s interventions. The doctor and nurse then sat for a few minutes with the patient and family to explore their worries and to provide counseling and reassurance. How many places in the developing world, I thought, have hospice or palliative home care teams capable of providing on-the-spot symptom relief, IV therapy, bladder catheterization, and psychotherapy? My trainees had surpassed what their trainer could have imagined.
In light of this well-functioning home care model, the city now plans a scale-up. While palliative home care can become accessible by everyone only when health insurance covers its, universal accessibility would likely improve patient outcomes across the city, reduce overcrowding in central hospitals, and result in cost savings.
Eric L. Krakauer, MD, PhD is Director of International Programs at Harvard Medical School Center for Palliative Care, Boston (USA). His bio is found at: https://hospicecare.com/bio/eric-krakauer/by Dr KS Chan, Hong Kong
Hopelessness is considered a predictor for both suicidal ideation and the request to hastened death among terminally ill patients. Hope is perceived as a factor closely related to the well being of advanced cancer patients. The concept of hope in the context of cancer patients has been extensively researched in the western world. Dufault and Martocchio (1) defined hope as a multidimensional dynamic life-force characterized by a confident, yet uncertain, expectation of achieving a future good, which, to the hoping person, is realistically possible and personally significant. Furthermore, the phenomenon of hope was described as two distinct spheres, generalized and particularized, with six dimensions: affective, cognitive, behavioural, affiliative, temporal and contextual. Various hope enhancing programs were also reported in the western literature.
However, there is little research on the meaning of hope among Asian palliative care patients other than the exploratory study of 8 patients reported by Dover Park Hospice of Singapore (2).
A qualitative study was launched in Haven of Hope Hospital of Hong Kong to explore the meaning of hope among Chinese palliative care cancer patients. The palliative care unit provided inpatient, outpatient and home care services with a caseload of approximately 250 advanced cancer patients and 100 non-cancer patients at a time. Patients with different religious beliefs are admitted despite the hospital having a Christian background.
Between February and April 2008, 17 participants including 8 women and 9 men aged between 49 and 84 years old were recruited from the palliative outpatient or inpatient services. Hope, as experienced by this sample of Chinese advanced cancer patients in Hong Kong, was found to consist of five components (3) :
Each component of hope represented a variable that could fall on a hopelessness-hopefulness dichotomy.
Hope in terms of living a normal life involved the dichotomy between the will to live and the struggle to live. The core factors that determined whether the participants could remain hopeful in this component of hope were the possibility of living at home, symptom control, functional independence, and having a social life.
Hope in terms of social support involved the dichotomy between having social support and lacking social support. The core factors that determined whether the participants could remain hopeful in this component of hope were having support from both family and health professionals.
Hope in terms of actively letting go of control involved the dichotomy between giving away control and giving up control. The participants could remain hopeful if they actively chose to let go of control instead of passively losing it.
Hope in terms of reconciliation between life and death involved the dichotomy between acceptance of death and avoidance of death. The participants could remain hopeful if they considered death as a natural process of life by living with the disease while preparing to die, rather than attributing death to an incurable disease and avoiding death by focusing on the cure.
Hope in terms of wellbeing of significant others involved the dichotomy between perceived wellbeing of the family and worries regarding the wellbeing of the family. The participants could remain hopeful in this component of hope if they perceived that their families were living well now and would continue to live well after their death.
The above findings are partly in line with the findings of hope in the western literature.
One particular theme of hope that emerged from the study data is actively letting go of control. The study revealed that patients could remain hopeful if they actively chose to let go of control instead of passively losing control. This may be related to the Taoist naturalistic philosophy of life of traditional Chinese culture. Actively letting out of control may increase hope while passively losing control may lead to hopelessness.
The meaning of hope among Chinese needs further exploration and its practical implication in daily clinical practice.
References:
Dr. Chan isConsultant & Chief of Service of Pulmonary and Palliative Care Unit of Haven of Hope Hospital in Hong Kong. His complete bio may be found at: https://hospicecare.com/bio/kin-sang/
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