PALIAŢIA, Vol 7, No 2, April 2014 ISSN

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2 PALIAŢIA, Vol 7, No 2, April 2014 ISSN CONTENT EDITORIAL Quality of palliative care in nursing homes Heuvel van den WJA ORIGINAL PAPERS A qualitative evaluation in eight nursing homes of the intervention project Hospiceand palliative care in nursing homes, a two year process Beyer S, Pissarek A, Rauscher O CLINICAL LESSONS The use of methadone in the treatment of chronic pain Pop RS The needs of children with incurable diseases Ciobanu E MANAGEMENT The involvement of the family physician in according palliative care Pop RS Palliative care in primary care COMMENTS, DISCUSSION The concept of total pain and its application in the clinical practice Bălaşa I NEWS The picture on the cover: French Riviera from Wil van Leeuwen, The Netherlands, (1986) 2

3 EDITORIAL Quality of palliative care in nursing homes Prof. Dr. Wim J.A. van den Heuvel, Chairman of the International Editorial Board of PALIAŢIA Nursing homes are increasingly the place for the growing number of frail older people and consequently the place where they will die. For most patients institutions like nursing homes are not the preferred place to stay and die, but most of the time the patient has no choice. Various studies show the large number of patients who die in nursing homes. This is the case in Australia, Canada, the United States and Wes-European countries. Over half of these patients have dementia, but still some medical doctors believe palliative care is only for cancer patients. The aim of palliative care is to achieve the best possible quality of life for the individual patient (and family). The need for palliative care does not depend on any specific medical diagnosis, but on the person's needs. Palliative care involves coordination of the skills and disciplines of many service providers. Despite this well-known fact providing palliative care in nursing homes is replete with challenges. A major one is to improve the quality of palliative care in nursing home as the article of Beyer et al demonstrate in this issue of Paliatia. This and other studies show that a change in culture is needed in nursing homes: from goals directed at organizational issues to goals directed at the old person. To realize such a cultural change various steps have to be made: 1. care providers have to have an open attitude and sensitive toward dying and death, 2. knowledge and skills are needed among all personnel to deliver proper palliative care, 3. time, manpower and facilities (privacy) have to be available for palliative care. Or to put it differently: quality of (palliative) care in nursing homes is often inadequate because of: lack of sensitivity and open attitude to patients, who will not be cured and are going to die; insufficient knowledge and expertise in palliative care at all levels in the institute, and a shortage of material and organizational support. The studies mentioned under references indicate that a change can be made and that patients, family and care providers benefit from such change in culture. There is excellent practice Training is vital to ensure sensitivity and expertise, followed by organizational support. But this all will only be realized if there exist a societal acceptance of chronic illnesses, incurable diseases, dying, and death. References 1. Beyer S, Pissarek A, Rauscher O. A qualitative evaluation in eight nursing homes of the intervention project Hospice and palliative care in nursing homes, a two year process. Paliatia 2014;7(2): Improving Palliative Care in Nursing Homes. Center to Advance Palliative Care. New York, Janssens RJPA, Have HAMJ ten. The concept of palliative care in the Netherlands. Palliative Medicine 2001;15: Meier DE, Lim B, Carlson MD. Raising the standard: palliative care in nursing homes; Health Affairs 2010;29: Percival J, Johnson M. End-of-life care in nursing and care homes. Nursing Times 2013; 1/2:

4 ORIGINAL PAPERS A qualitative evaluation in eight nursing homes of the intervention project Hospice- and palliative care in nursing homes, a two year process Sigrid Beyer (a), Anna Pissarek (b), Olivia Rauscher (c) (a) project manager and scientific contributor project Hospice and Palliative Care in Nursing Homes, Hospice Austria (b): PR and project coordinator Hospice and Palliative Care in Nursing Homes, Hospice Austria (c): NPO-Competence Center of the Vienna University of Economics and Business, Austria Corresponding author: Anna H. Pissarek: dachverband@hospiz.at Abstract From 2009 to 2012 Hospice Austria and Hospice Lower Austria hosted a project ''Hospiceand Palliative Care in Nursing Homes''. It was a 2-year organization development process including training in palliative geriatrics of 80% of all staff. The NPO-Competence Center of the Vienna University of Economics and Business was commissioned with the evaluation. The results state overall improvements regarding quality on the various levels of care, for residents as well as for caregivers and relatives. Hospice culture and palliative care have more and more become part of a nursing home s daily routine. The staff is actively sharing about and discussing death, dying and related matters. Palliative groups and palliative care representatives are an integral part of everyday life in the homes. Interdisciplinary cooperation has been improved. Personal wishes of dying residents are being better met, complementary therapies have increased and pain therapy was improved. Relatives and other loved ones are better informed and more integrated. It also became apparent that medical care and palliative medical care are insufficient and recurring personnel shortages occur. Key words: palliative care, nursing homes, interdisciplinary cooperation Introduction Many residents of nursing homes suffer from multiple terminal illnesses with phases of progressive deterioration, many suffer from dementia. As a result an expertise in hospice and palliative care is highly required on all levels. In Austria there are about 800 nursing homes. Nearly all patients in nursing homes need palliative care. Starting with day one curative care and palliative care are combined. Gender and cross cultural competence have become critically relevant. Sensibility in both areas enhances the quality of care. Following the pioneering steps of Hospice Vorarlberg, Hospice Austria started to develop guidelines for the implementation and designed an organization development process in When Lower Austria started the project, it included a 36 hrs training in Palliative Geriatrics for ALL staff. This training was developed by Prof. DDr. Marina Kojer and Dr. Ulf Schwänke and uses the storyline method to enhance learning in a group with a very mixed educational background. 4

5 The project in Lower Austria From 2009 to 2012 Hospice Lower Austria in cooperation with Hospice Austria hosted the intervention project Culture of Hospice and Palliative Care in Nursing Homes in 8 nursing homes (see also PALIATIA - Journal of Palliative Care Vol 4, Nr 3, 16-19). With Christiane Krainz and Sonja Thalinger two professionals were found who managed the project and counselled the nursing homes in their organization development. Together with the management of the homes they initiated the setup of project targets and the installation of palliative care representatives and palliative care teams in each of the participating homes. They organized the training in Palliative Geriatrics by the end of the three years around 80% of ALL staff had participated in it. Another important step was to properly involve the management of all levels within the homes, but also on a broader level within the political and society framework of Lower Austria. Objectives and method of the evaluation The NPO-Competence Center of the Vienna University of Economics and Business was commissioned with the evaluation. The evaluation examined the outcomes of the intervention project and analyzed them in the light of the objectives set. The main scientific question was: Which outcomes are caused by the intervention project concerning the main target groups? Methodologically, a multiple case study design was conducted. Two, respectively three pilot nursing homes were selected as subjects for single case studies. Within the case studies a pre-post design was used to determine the changes due to the intervention. For this reason comprehensive qualitative surveys were carried out before starting the project and after the project. In addition, qualitative interviews were conducted during the project in order to give feedback concerning the intervention process. Results The results showed that the homes had already implemented some elements of hospice and palliative care before the project started, but did not recognize them as such. In the course of the project the implementation was ongoing. The residents quality of life was rated high by staff and relatives independently from the project. This rating was linked to activities the home offered and the degree of independency the residents still had. During the project additional beneficial factors like aromatherapy, music and complementary therapies were added. Most of all: pain treatment improved. From the outset the homes confirmed an individual approach to the residents care in the last part of their life span. All professional groups said that during the project the sensitivity in caring for the dying had increased further. Whether and how conversations about death and dying took place, was strongly dependent on the resident s or relatives initiative at the beginning and also at the end of the project. The staff, however, had a greater awareness and shared much more in the team. Relatives taking part in the interviews said they felt well informed and were content with the care the residents received. At the beginning of the project recurrent difficulties had occurred between relatives and professional caregivers, at the end of the project both sides understood each other much better. The training in Palliative Geriatrics was generally considered as helpful, although some of the interview partners have had different expectations. The interview partners named as most significant changes achieved by the project an open discussion about matters related with death and dying in the team, with 5

6 residents and relatives, a higher awareness and more self-confidence when dealing with dying people. Discussion The evaluation highlighted how difficult it is to provide medical and palliative medical care for residents of nursing homes. Wherever doctors trained in palliative medicine are at least temporarily available, the situation was rated better. Another challenge is the level of staffing, esp. the low rate of licensed nurses. Solutions here require more than a nursing home can achieve on its own: it is an economic and political challenge Overall, however, we conclude that the intervention project has improved the quality of (palliative) care from the perspectives of patients, families and care professionals. 6

7 CLINICAL LESSONS The use of methadone in the treatment of chronic pain Rodica Sorina Pop, MD, family medicine, geriatrics, competence in palliative care, CMI Cluj- Napoca and Palliative Care Unit of Municipal Hospital Câmpia Turzii, Romania Address for correspondence: Abstract Methadone is a strong opioid with a complex mechanism: the agonist on miu receptors, the antagonist on N-metil-D-aspartat receptors and inhibitor for recapture of serotonin. Oral administrated methadone it is absorbed quickly and completely in the gut with high bioavailability. Plasmatic half-life is long and the methadone tends to build up in the tissues, which makes its analgesic action to last but with the appearance of side effects. Initiating treatment with methadone is made by slow loading, using 2, 5 mg tablets every 6 hours and after a week the dose is divided twice a day and for breakthrough it s used paracetamol 1000 mg/dose. After setting daily dose, you can recommend 1/8 of the daily dose of methadone for breakthrough pain. The patient should be supervised regarding the methadone cardio toxicity. There are some drugs that may influence methadone s metabolism at P450 cytochrome level that should not be neglected in the treatment. Key words: methadone, chronic pain, initiating, conversion, side effects (Full text in Romanian) 7

8 The needs of children with incurable diseases Estera Ciobanu, social worker, Emanuel Hospice, Oradea, Romania Address for correspondence: Abstract When a child is diagnosed with a threatening disease the family is suddenly in a world that it probably never knew that it existed: a world full of confusion, disbelief, agony, and hope. Difficult decisions have to be taken in balance with the reality of the diagnosis. A family faces many problems when one of the children is suffering from a threatening disease. Lewis (1999) suggests that services addressed to children with incurable diseases should focus on the family to meet the needs. Evaluation of the structure, functioning and social relations are needed to identify the symptoms and needs of the child. Professionals have to be able to evaluate the system of which the family is part of. The present paper analyses key issues in assessment and intervention in social services, exemplifying through a case study of a child diagnosed with an advanced incurable disease. Social workers have an important role in this care by providing education and support by listening, sharing, intervening to guide the family. Key words: palliative care, evaluation, children, quality of life (Full text in Romanian) 8

9 MANAGEMENT The involvement of the family physician in according palliative care Rodica Sorina Pop, MD, family medicine, geriatrics, competence in palliative care, CMI Cluj- Napoca and Palliative Care Unit of Municipal Hospital Câmpia Turzii, Romania Address for correspondence: Abstract In Romania almost 150,000 people annually require palliative care, but the coverage of specialized services is only 4.2% and 6.7 % for oncology patients. Palliative care is provided in various services: home palliative care, hospital palliative care teams, outpatient and day care centers. Currently there are many services but completely chaotic in terms of distribution in the country which makes many areas remain uncovered. To improve this situation quickly it is necessarily to coordinate and accelerate national development of palliative care services, based on a national strategy agreed by professionals and supported by the authorities. The Ministry of Health has developed a care package and a lists with objectives for palliative care in primary care provided by family physicians. For the future national palliative care packages are also mentioned to be delivered by the family physicians But to realise these objectives it is absolutely necessary to train family physicians properly in order to achieve a good quality palliative care services. Key words: palliative care, family physicians, quality of care (Full text in Romanian) 9

10 Palliative care in primary care Hospice ''Casa Speranței'' (Brașov, Romania) has initiated an evaluation project about community assistance that will benefit oncology patients. The project aims to develop a new model of community services that reduce barriers for cancer patients in accessing palliative care. The proposed project titled: "Removing disparities in access to basic palliative care in the community", it obtained financing through the Swiss-Romanian Cooperation Programme. The results of this project will be presented to the decision makers in the Romanian health system (Ministry of Health, the National Health Insurance, College of Physicians). This might offer opportunities to stimulate integrating palliative care in primary health care and at the community level. This project will take three years and the model of this palliative approach should be implemented in 4 pilot counties: Brașov, Bucharest, Iasi and Cluj. The model will be based on the cooperation and exchange of experience between Romania and Switzerland'. Participants are Hospice ''Casa Speranței'' (Romania), Cantonal Hospital of St. Gallen (Switzerland) and Media Research Centre (Bucharest, Romania). Project results are expected to have an impact at the national level by convincing policy makers and give them the tools to provide basic palliative care in the community, responding to the needs of patients. 10

11 COMMENTS, DISCUSSION The concept of total pain and its application in the clinical practice Bălaşa Ionela, MD, medical rehabilitation, physical medicine and balneology, Rehabilitation Physical Medicine and Balneology Hospital, Eforie Nord, Constanța, Romania Address for correspondence: Abstract Total pain treatment requires a complex and multifactorial approach; quality of life (QOL) is a core outcome of palliative care and pain treatment. Cancer pain management should comprise a correct diagnosis of any particular type of pain (physical, psychological, social and emotional), optimization of analgesia with oral opioids, adjuvant analgesic and non pharmacological therapies. Physicians` experience with prescribing opioid is important and opioid has to be available for all patients in palliative care. Key words: total pain, palliative care, opioid, analgesia, quality of life (Full text in Romanian) 11

12 NEWS The XV Conference of the Romanian National Association of Palliative Care The National Association for Palliative Care (ANIP) will be held on 9-11October 2014 in Timişoara, Romania. Details on 12