C41 PALLIATIVE CARE BEYOND CANCER
Addington‐Hall J
University of Southampton, Southampton, UK
E‐mail address for correspondence: [email protected]
From its inception in the 1960s, palliative care has focused primarily on the care of terminally ill cancer patients, with these patients still making up 92% of those receiving care from hospice and specialist palliative care services in the UK. There has, however, always been recognition that the principles and practice of palliative care might also benefit other patients with life‐threatening long‐term conditions and some, particularly in the UK those with ALS, have received this care.
There is now increasing acknowledgement in many countries that palliative care should be provided on the basis of need, not diagnosis, challenging the cancer focus. There is also growing evidence of the presence of palliative care needs (including pain and other symptoms, psychological and spiritual distress, and family distress) beyond cancer; these needs are particularly apparent in people living with ALS.
Addressing these needs presents significant challenges, however. These include the reluctance of some palliative care providers to become involved with patient care beyond cancer, and reluctance of some of those currently caring for these patients to consider that palliative care should be involved, at least until the very end of life. These attitudes adversely affect the partnership working between palliative care and other health and social care agencies (for example, between neurological, rehabilitative and palliative care services) which is essential to palliative care beyond cancer, and which is in itself challenging to achieve. Other challenges include funding issues and public perceptions of palliative care.
Models of collaborative working which address some of these challenges will be presented, and the importance of services working together to meet patient and family need will be emphasized. By moving beyond cancer, palliative care specialists can bring their particular expertise together with that of those specialists currently caring for patients with long‐term life‐threatening conditions to further improve the quality of the time remaining to these patients.
C42 FACTORS DETERMINING EUTHANASIA AND PHYSICIAN‐ASSISTED SUICIDE AMONG PATIENTS WITH ALS IN THE NETHERLANDS (2000–2005)
Veldink JH1, Maessen M1, van der Wal G2, Wokke JHJ1, van den Berg LH1
1University Medical Centre Utrecht, Utrecht, The Netherlands, 2Department of Social Medicine and the Institute for Research in Extramural Medicine, VU Medical Centre Amsterdam, Amsterdam, The Netherlands
E‐mail address for correspondence: [email protected]
Background: Previously, we have reported that during the period 1994–1998 one in five patients with ALS in the Netherlands died as a result of euthanasia or physician‐assisted suicide. Euthanasia and physician‐assisted suicide were not associated with any of the disease or care‐related characteristics or with income or educational level.
Objectives: 1) to determine whether rates of physician‐assisted death are increasing (slippery slope); 2) to determine in more detail whether relationships exist between quality of care, quality of life, symptoms and physician‐assisted death according to spouses of deceased patients; 3) to determine the reasons for physician‐assisted death according to spouses.
Methods: We identified physicians of 308 patients who were diagnosed as having ALS and died between 2000 and 2005 in the Netherlands. The physicians were asked to complete a validated questionnaire to investigate the medical end‐of‐life decisions that were made and possible care‐related, clinical and social correlates. Of 282 eligible physicians, 215 returned the questionnaire (76%). Spouses of patients were contacted also, and 75% returned the questionnaire.
Results: Euthanasia occurred in 36 of 215 patients (17%) and physician‐assisted suicide in three of 215 patients (1%). For comparison, in 1994–1998 we reported these frequencies as 17% and 3%, respectively. Euthanasia and physician‐assisted suicide were not associated with any of the disease or care‐related characteristics or with income or educational level. In addition, according to the information provided by the spouses, there were no relationships with the patient feeling a burden, availability of aids and appliances, or depressive symptoms. The main reasons for physician‐assisted death were fatigue, loss of dignity, and dependency. These reasons were more frequent in the physician‐assisted death group as compared to the patients who died after another medical end‐of‐life decision (e.g. to forego or withdraw treatments, or to provide opiates to relieve symptoms with a potential life‐shortening effect). Reasons that were not increased were: feeling a burden, depression, fear of choking, and pain.
Conclusions: We did not find signs of a slippery slope with regard to physician‐assisted death among patients with ALS in the Netherlands. Furthermore, analysis of quality of care, quality of life and symptoms, including depression, did not show an association. Main reasons for physician‐assisted death were fatigue, loss of dignity, and dependency.
More results will be presented and discussed, also in relation to standards of palliative care in the Netherlands.
C43 FOLLOW‐UP SURVEY OF PATIENTS WITH ALS/MND INTERVIEWED ABOUT SELF‐DETERMINATION
Narita Y1, Nakai M2, Kuzuhara S3
1Mie University Hospital, Medical Care Networking Centre, Tsu, Japan, 2The Liaison Council of the Networking for the Patients with Intractable Diseases, Tsu, Japan, 3Mie University, Department of Neurology, Tsu, Mie, Japan
E‐mail address for correspondence: [email protected]
Background: At the 16th International ALS/MND Symposium in Dublin, we reported the results from semi‐structured interviews revealing that many ALS/MND patients in our prefecture of Japan seemed to think about self‐determination to choose the options for the medical management at the advanced stages of their disease. Since then, we have followed most of the cases directly at our clinic, or indirectly via the Liaison Council of the Networking for the Patients with Intractable Neurological Diseases in our prefecture.
Objectives: To study the present stage of the illness of the patients and the status of the self‐determinations after the interviews.
Methods: Twelve out of the 14 ALS/MND patients who had received semi‐structured interviews from November 2004 to March 2005 were submitted for our survey. The patients, families or health care professionals were interviewed again between February 2006 and April 2006.
Results: Nine patients were still alive and three were deceased after the previous interviews. Four patients with a mechanical ventilator with tracheostomy (TMV) were still alive, although their conditions had gradually deteriorated. The ALSFRS‐R scores of the subjects decreased from 19.1±16.5 to 15.9±16.1 during this interval (average±standard deviation). In total, six patients made their own advance directives. Two of them revoked the directives and chose TMV. All three of the deceased patients did not want to receive it and died at home. Two of the deceased had written advance directives that were not used, as an ambulance was not called. One patient recently made a written directive to resolve an intrafamilial conflict.
Discussion and conclusions: It may be exceptional that half of the patients made advance directives in our small series and none of them were involved in a legal case to date. Patients who thought about self‐determination seem to have chosen written documents rather than verbal expression only for resolving their internal conflicts, not for using it as a legal document.
Some guidelines or legislation for the scheme to support the patients' wishes seem to be necessary in Japan before serious legal problems occur for patients, families or health care professionals.
C44 PEOPLE LIVING WITH ALS/MND TELL THE DIAGNOSIS STORY: WHAT HAPPENED BEFORE THEY KNEW
King SJ1, Duke MM1, O'Connor BA2
1School of Nursing, Deakin University, Victoria, Australia, 2University of Queensland, Queensland, Australia
E‐mail address for correspondence: [email protected]
Background: Being told that one has a life threatening disease is shattering, but for some people it comes as a relief, following as it does the years of uncertainty and traumatic experiences that lead to diagnosis. The need to debrief the experience is paramount before the story of living with the disease can be told.
Objectives: The purpose of this paper is to describe the extended and often demoralising process of diagnosis for people with ALS/MND.
Methods: Grounded theory methodology was used to explore the life and world of people diagnosed and living with ALS/MND. Data were collected via in‐depth interviews with 25 people with the disease, their stories and photographs, poems and books they identified as important, and field notes. The textual data were analysed using constant comparative analysis. All people who volunteered were included in the study. Many participants with communication challenges worked with the researcher to tell their stories.
Results: Participants recounted the processes they experienced prior to the time when they were finally given a reason for the perplexing behaviour of their bodies. The diagnosis story was revealed as a sequence of: ‘recognizing a problem’, ‘seeking medical help’, ‘being on the diagnostic roundabout’, ‘confirming ALS/MND’, ‘re‐evaluating life and the future’, then ‘living with ALS/MND’. Consequences included a loss of trust in the competence of the health care system, which had implications for seeking help later when living with the disease.
Discussion: Participant distress seemed to have more in common with the stress linked to post‐traumatic stress disorder (PTSD). Participants continued to relive the diagnosis experience in their dreams and daily lives many months after diagnosis, which impacted negatively on their well‐being. For this group of people, the diagnostic process itself was the traumatic stressor. It seemed that telling their stories gave them the opportunity to debrief and have their words recorded. Debrief support is recommended when the ALS/MND diagnosis is finalized, and continued, to prevent long‐term reliving of the diagnostic process.
Conclusion: Health professionals continue to address the issues around the process of giving the ‘bad news’ of ALS/MND. This ‘diagnosis story’ may provide additional guidance in addressing the process so as to limit potential harm and promote well‐being for people with the disease and their families.
Acknowledgement: The project – ‘Negotiating life choices: living with ALS/MND’ was funded and supported by The Australian Research Council, Deakin University, Bethlehem Griffiths Research Foundation, Calvary Health Care Bethlehem Inc. and the Motor Neurone Disease Association of Victoria. Susan King was a joint recipient of the Nina Buscombe Award 2002 and 2004, study completed in November 2005.
C45 PALLIATIVE CARE: A CHANGING ROLE IN MND/ALS
Oliver DJ
Wisdom Hospice, Rochester, UK
E‐mail address for correspondence: [email protected]
Background: Although specialist palliative care has been involved in the care of people with MND/ALS, the roles are changing. Due to increasing pressures on services there is a tendency for them to be involved later in the disease progression. There is also the possibility of developing relationships and collaboration with neurological services in the care of all people with advancing and progressive neurological disease.
Objectives: The aim of this paper is to look at the development of a collaborative approach in the care of people with MND/ALS.
Methods: A literature review and discussion will be presented showing the possible move towards a collaborative approach in care
Results: As there is increasing pressure within the UK to be involved with the palliative care of more patient groups there is the need to re‐evaluate the role of specialist palliative care. There have been other studies showing the palliative care needs for multiple sclerosis and Parkinson's disease, revealing that there are both symptom and psychosocial issues that need to be addressed.
MND/ALS is different, in that the rate of deterioration is greater. However this is changing with the increased use of ventilatory support and gastrostomy, and life expectancy may be increased. Moreover, the expectations of the patient and family may become over‐optimistic, with reduced awareness of the possibility of deterioration and death.
There may be an increasing role for palliative care services to be involved alongside other neurological or rehabilitative services and to take a greater role as the end of life is approached. This would allow involvement and support in decision making by patients and families.
Discussion: The paper will look at these changing roles and the need to re‐evaluate the collaborative approach in the care of people with MND/ALS. This may involve increased collaboration at times, when decisions are made, and reduced contact when the patient is relatively more stable. There will be the need to ensure that, despite all the interventions that are made, the patient and family are still aware of the potential for deterioration and the need to anticipate and prepare for the deterioration at the end of life.