Palliative Care through Relatives' Eyes

Abstract

Aineiston keruussa käytettiin sekä syvähaastaatteluja että tarkoitusta varten suunniteltua kyselylomakketta. Tutkimuksessa selvitettiin, miten omaisten arvioimana kuolevien vanhuspotilaiden hoito oli onnistunut ja mitkä tekijät olivat edellytyksinä hyvälle elämisen laadulle. Tavoitteena oli tutkia kuolevilla potilailla esiintyviä oireita ja ongelmia, kipuja tai pahanolontunteita sekä tarkastella, miten omaisten näkökulmasta katsottuna hoidon tarpeisiin oli vastattu. Tutkimuksessa etsittiin myös vastauksia siihen, mitä omaiset pitivät hyvänä ja mitä huonona hoitona.

Tutkimustulosten mukaan kuolevilla vanhuspotilailla esiintyi omaisten arvioimana monenlaisia oireita ja ongelmia. Vähintään kohtalaista kipua oli esiintynyt 211 potilaalla (57%). Kipua oli esiintynyt vähemmän kotona hoidetuilla potilailla (p=0.003) kuin sairaalassa hoidetuilla. Kivun hoito oli omaisten mielestä ollut huonoa 46 potilaalla (22%). Erot hoitopaikkojen tai sukupuolten välillä eivät olleet merkitseviä. Potilaat kärsivät myös tuskaisuudesta, turvattomuuden tunteesta, alakuloisuudesta, surullisuudesta ja depressiosta. Avuttomuuden tunteen kokeminen oli myös yleistä, varsinkin kivusta kärsivillä potilailla.

Omaisten mielestä 87 potilaalle (28%) tehtiin turhia tutkimuksia tai turhia hoitotoimenpiteitä. Omaiset arvioivat kivun hoidon huonoksi tai turhia tutkimuksia tehdyksi, jos hoitopaikan ilmapiiri ei ollut lämminhenkinen, kommunikointi ei onnistunut tai informaatio sekä tuen saanti ei ollut riittävää.

Hyvän hoidon edellytyksinä omaisten mielestä oli toimiva kotihoito, palvelujen jatkuvuus ja joustavuus sekä hoitajien positiiviset piirteet, empatia ja huumori hoitotyössä. Huonoksi hoito arvioitiin silloin, kun kivut ja oireet eivät olleet hallinnassa, hoitoympäristö oli rauhaton, hoidossa ei ollut jatkuvuutta, hoitajat työskentelivät rutiininomaisesti tai käyttäytyivät epäystävällisesti.

Omaiset kokivat itse saaneensa tukea melko hyvin. Heitä oli kannustettu osallistumaan kuolevan potilaan hoitoon, järjestetty mahdollisuus keskustella rauhassa sekä lohdutettu ja oltu tarvittaessa läsnä.

Omaisten arvion mukaan hyvällä palliatiivisella hoidolla on suuri merkitys kuolevan potilaan hyvään oloon ja hyvään elämisen laatuun. Tämän vuoksi tulisikin kuolevan potilaan hoitoon suunnata voimavaroja siten, että hyvä hoitaminen olisi mahdollista. Haasteellisena voidaan tutkimuksen tuloksia pitää ainakin niiltä osin, jotka koskevat hoitoympäristöä ja ilmapiiriä, informaation kehittämistä, omaisen ja potilaan kohtaamista ja tukemista, hoidon jatkuvuuden ja joustavuuden sekä hoitohenkilökunnan toiminnan perusedellytysten varmistamista.

The purpose of the study was to find out how the relatives of elderly persons experienced the palliative care of their significant others and what issues were essential for the good quality of the patients' lives. The objectives were to find out the possible symptoms and problems which the patients had and how their needs were met. An additional aim was to clarify the features of good and poor palliative care.

This study used relatives of dying patients as the information source. The care was assessed retrospectively approximately one year after the patients' death. The data were gathered mainly with questionnaires which had 45 structured and three open-ended questions. It was created specially for this study and it was directed at dimensions of physical, mental, social and spiritual well-being. The patients were home-care patients who had participated in a study of geriatric assessment and rehabilitation program in the primary health care district of Central Finland and who had died within a two year follow-up (n=151), patients (n=297) who had died within one year in the City Hospital of Turku, and in the Geriatric Unit of the Helsinki University Central Hospital (n=42). The number of respondents was 139, 191 and 42, respectively. Thus the average response rate was 76%. The mean age of dying patients was 80 years. The mean age of responding relatives was 61 years. Results are expressed as percentage and frequency distributions, a Chi-square test was used when cross-tabulating the material according to the setting of care. The 95% confidence intervals of the odds ratios were calculated according to Gartner and Altman (1989). Stepwise logistic regression analysis was used for calculating the odds ratios of independent risk conditions of unsuccessful pain management and medical futility. The quality of life conceptions of the relatives (n=9) were collected by interviews which had two main themes: description of good quality of life and good palliative nursing. The interviews were analyzed by using phenomenography as the method of analysis. The open ended answers of the questionnaires were content analyzed by using the classification of Donabedian (1969).

The results show that according to relatives' estimations the patients had various physical and mental symptoms and problems. Of the 371 patients, 211 (57%) had suffered from moderate to severe pain. Pain was less common (P=0.003) in patients who died at home than in hospital. The pain relief was regarded as unsuccessful in 46 patients (22%). The differences among treatment places and between the sexes were insignificant. Apart from pain, the dying patients also suffered from anxiety, insecurity, melancholy, sadness and depression. The feeling of helplessness was particularly common and it related significantly to the unsuccessful pain relief.

The family members noted also different kind of medical futility in 87 patients (28%), e.g. unnecessary medication, unnecessary examinations, treatments and care processes. When the care of daily needs or symptoms and discomforts was poor, or when the patient's opinion about the need for analgesics was not taken into account, when information or support had failed and the atmosphere in the caring site was poor, the relatives assessed that the pain relief to be insufficient. Risk factors for medical futility were also reported.

Suitable premises and environment, well-functioning home nursing, continuity and flexibility of service and positive features of nurses were structural prerequisites for good outcome, e.g. satisfied patient in physical and mental balance. Good primary care, good information, humor in care and support were important issues during the nursing process. The nursing staff's impolite behavior, routine working style, restless environment, discontinuous and poor primary care were indicators of a weak quality of care.

The relatives were supported relatively well e.g. by organizing possibilities for discussions, encouraging them to participate in the dying patient s care and comforting them. The staff had also been present when needed.

The good quality of life of incurable ill persons was based not only on the person's own and his family's resources but also on professional palliative nursing.

It can be concluded that dying elderly patients suffered frequently from pain, medical futility and various kinds of symptoms and problems according to their relatives assessment. The majority received adequate pain relief and daily needs of the patients were well taken care of. The importance of good atmosphere and treatment environment, information and easiness to discuss with the staff were of great importance when assessing the care. The professional palliative care was essential in increasing the dying elderly patients well-being and quality of life. According to the relatives conceptions it was an integral part of the quality of life together with other more personal dimensions. That is an interesting challenge for multidisciplinary teams while developing the palliative care of elderly patients.