Äldre personers sista tid i livet. Livskvalitet, vård, omsorg och närståendes situation

Sammanfattning: Popular Abstract in Swedish The last period of life among older people has been very little explored, even though it is well known that for the majority of the population death will occur in old age, both in Sweden and in other western countries. The intention in Swedish society is to provide high quality end of-life care for everyone (SOU 2001:6), not just to those receiving care in a hospital or hospice, but also to those receiving care in their own homes or in special accommodation. The trend in Europe is for old people to remain in their own homes for as long as possible and to receive the help and care they need there, including end-of-life care. Providing high quality care for older people may, however differ from providing care for younger people since the former may value other things in life and since their life is restricted by health problems of various kinds, at least those receiving public care at home or in special accommodation. Thus knowledge derived from research that includes younger people in palliative care cannot easily be transferred to those in very old age. Informal care is often provided for older people. Being the next-of-kin of an old, dying person implies not only being involved in their care but also in the emotional stress generated by the forthcoming loss of a loved one. In order to provide high quality care in the last period of life it is important to know about the factors that are related to quality of life (QoL) but also about the distribution of care and place of death. There are also very few investigations, from their own perspective, of the life situation of old people in the last phase in life. Such knowledge is essential if our understanding of their situation is to be improved. It is also important to explore the next-of-kin's experience in this situation, particularly since the next-of-kin is often involved in the care of the person even if they receive public care. The overall aim of this thesis was to investigate old people's care and quality of life during the last period of life, but also to investigate their own and next-of-kin's experience of this phase. The thesis is based on four studies using separate samples; two studies that have a quantitative approach (Papers I and II) and two that have a qualitative approach (Papers III and IV). The aim of Paper I was to investigate age, living conditions, dependency, care and service among old people during the last year of life, but also the place of death and the factors that predict the place of death. The sample was drawn from the care and services part of the sub-study ?Good Aging in Skåne? in Swedish called Gott Åldrande i Skåne (GÅS). The GÅS study is in turn a part of the longitudinal multicentre study entitled the Swedish National study on Ageing and Care (SNAC), which started in year 2001. The criteria for inclusion in study I were: being 75+ years, having died during the years 2001?2004 and having received public care and services at home or in special accommodation. The study sample consisted of 1198 people with a mean age of 87.6 years. The results showed that in the last year of life, 82% of those living at home and 50% of those living in special accommodation were hospitalised. The median length of stay was 10 days for the group living at home and 6.7 days for the group living in special accommodation. Those living at home were younger and less dependent in ADL than those living in special accommodation during their last year of life. The results also showed that those living at home and those with several hospital stays more often died in hospital than those living in special accommodation and those with fewer hospital stays. In the total sample more visits to physicians in outpatient care predicted death in hospital, while living in special accommodation and PADL dependency predicted death outside hospital. Old people thus consume a considerable amount of municipal care as well as outpatient and in-hospital medical care in their last year of life, especially those who lived at home. Those living at home also more often died in hospital. The aim of Paper II was to examine the last period in life among old people aged 75 years or older in need of help with IADL, with the focus on quality of life, sense of coherence, health complaints and self-reported diseases, but also to investigate factors associated with QoL and those predicting mortality. The study sample comprised 411 people of whom fifty of the respondents (the study group) had died one year after data collection, the 361 survivors were considered a comparison group. The sample was a sub-sample of that of the larger study, ?Quality of life and care of older person in special accommodation or living at home with support from next-of-kin and/or public care. A population study? called in Swedish ?Livskvalitet, omvårdnad och omsorg till äldre i särskilt eller eget boende med stöd av närstående och/eller offentlig vård. En populationsstudie?. The results showed that the study group had a lower QoL than the comparison group. Factors that effected the quality of life negatively were more admissions to hospital and a larger number of health complaints. The analysis showed that factors predicting mortality were older age and more health complaints. The study indicate that old people in their last period of life need help with IADL, and have lower a QoL compared to those who not are in this phase. This group of people also has more health complaints, which in turn affects their QoL negatively. In Paper III, the aim was to investigate the experiences of aspects that engender a good life in the last phase of life among people (75 + years) receiving municipal care. The participants were older people living in a municipality in Southern Sweden, aged 75 years or older, who received municipal help and/or care and had a life-threatening disease and/or received palliative care. In all 17 people, 10 women and 7 men, aged 78-100 years were included. Of the respondents, 9 people lived at home and 8 in special accommodation. Qualitative interviews were conducted with the emphasis on the older person's current life situation and especially on what engendered a good life. The interviews were analysed using qualitative content analysis. The results of the study showed that the experience of their current situation could be understood as Turning inwards to come to peace with the past, the present and approaching death while being trapped by health complaints. Six categories embraced the experience of aspects that constitute a good life in the last phase of life; Maintaining dignity, Enjoying small things, Feelings of ?being at home?, Being in the hands of others, trying to adjust, Still being important for other people and Completing life while facing death. The struggle to maintain dignity as opposed to being in the hands of others must be highlighted in the care of old people at the end of life. The study confirmed theories suggesting that the last period in life means turning inwards, reflecting on an entire life as a way of completing it. The aim of Paper IV was to investigate the experience of being a next-of-kin of an older person in the last phase of life, as narrated after the older person's death. Qualitative interviews were performed with the next-of-kin of people aged 75 years and older who had recently died and had received help and/or care from the municipality in the last phase of life. The sample consisted of seventeen people, eleven women and six men, of whom seven were spouses, nine were children and one was a grandchild. The interviews were analysed using qualitative content analysis. The results showed that the experience of the next of kin could be understood as Being a companion in the transition towards an inevitable death feeling of having the major responsibility and needing to be acknowledged by professionals, which included the categories: Being a companion on the path to death; Focusing on the needs of the dying person, and making adjustments to everyday life; Feeling the major responsibility, and Gaining strength from support. From the next-of-kin's view this phase meant being main responsible for their relative and needing to be acknowledged by professionals. This indicates the importance of having professionals standing by, ready to support the next-of-kin when needed, for the best possible care to be provided for the dying person as well as for his/her next-of-kin. The results from the studies in the thesis indicate that older peoples? last phase of life is coloured by health complaints and frequent care in hospital, which in turn affects their quality of life. Their own experience of this situation was being in the hands of several care providers, and trying to adjust to the situation. In order to provide high quality care in this phase it is important to increase the co-operation between various care providers with the aim of meeting the older person's wishes and needs concerning place of care as well as of death. It also seems important to highlight individual needs that promote quality of life in this period, such as having the possibility to enjoy the small things in life and being able to still be involved in the world around. It is also important to support the need to complete life by facilitating narrations of their life story in order to achieve peace of mind. As the next-of-kin are involved in the care and are emotionally affected by the situation, their needs for support should also be acknowledged. This means they need to be seen by the professionals as well as by others around in order to retain their sense of participation, even when professional care providers are involved.