<p><strong>Bakgrund: </strong>Den palliativa vården ska vila på etiska utgångspunkter och en helhetssyn av patienten samt utgå från patientens behov. Centralt för den palliativa sjuksköterskan är att vara relationsskapande, stödjande, kommunikativ och koordinerande. God omvårdnad i livets palliativa slutskede och vilka nutritionsåtgärder som ska vidtas när inte längre föda via munnen är möjligt, är svåra beslut att ta för att ge patienten en fridfull död. <strong>Syfte: </strong>Syftet med studien är att belysa sjuksköterskors erfarenheter av att ge, avsluta eller avstå enteral eller parenteral nutrition till patienter i palliativt slutskede. <strong>Metod: </strong>En<strong> </strong>litteraturöversikt genomfördes där totalt 10 kvalitativa och kvantitativa vetenskapliga artiklar granskades och analyserades enligt Fribergs (2006) modell. <strong>Resultat: </strong>Ur resultatet identifierades fyra kategorier, vilka var <em>livskvalitet, etiska aspekter, kommunikation</em> <em>och utbildning </em>med tio tillhörande subkategorier. Resultatet visar att om sjuksköterskor har en tidig dialog med patient, anhörig och läkare angående nutritionsåtgärder i palliativt slutskede skapas bättre förutsättningar för en individuell vårdplan och bevarande av patientens autonomi. Samtidigt framkommer det att sjuksköterskor känner sig otrygga i dialogen angående nutritionsåtgärder på grund av bristande kunskap om den fysiologiska processen i döendefasen. <strong>Konklusion: </strong>Mer utbildning behövs för att sjuksköterskor ska känna sig tryggare i sin roll avseende nutritionsåtgärder i palliativt slutskede.</p><p> </p> / <p><strong>Background: </strong>Palliative care requires an ethical and comprehensive view of the patient and his/her needs, and it is essential to create a supportive relationship with the patient while efficiently coordinating with one’s colleagues. It is difficult for nurses to makethe proper decisions about nutritional measures in order for the patient to have a peaceful death. <strong>Aim:</strong> The aim of this study is to highlight nurses’ experiences with giving, finishing or abandoning nasogastric intubation and parenteral nutrition with patients during the final phase of palliative care. <strong>Method:</strong> A literature survey was conducted and 10 scientific articles were reviewed and analyzed according to the Friberg (2006) model. <strong>Result:</strong> Four categories (with ten subcategories) were identified: <em>life</em><em> quality, ethical aspects, communication, and education</em>. Nurses who create an early dialogue with the patient, relatives, and doctors about nutritional measures during the final phase of life improve individual care and preserve the patient’s autonomy. However, nurses feel insecure when it comes to nutritional measures because of a lack of knowledge about the physiological process in the phase of death. <strong>Conclusion:</strong> Further education is needed in order for nurses to feel more secure when making measures about nutrition in the final phase of life.</p>

<p>Tidigare forskning visade att omhändertagande möten med sjuksköterskan stärkte patientens självbild och skapade känslor av trygghet. Möten med sjuksköterskan som inte var omhändertagande skapade känslor av att bli nedbruten hos patienten. Patienterna ville vara delaktiga i sin egen vård. Det var inte lätt att vara anhörig till någon i livets slutskede. Det fanns inte mycket forskning skrivet om patientens upplevelser i livets slut. Syftet med studien är att beskriva patientens upplevelser av att befinna sig i livets slutskede. Studien var en litteraturöversikt med en kvalitativ ansats. I analysen jämfördes likheter och skillnader i studiernas resultat. Resultatet visade att en anpassad vård var av betydelse för patientens upplevelser av självständighet. När patienten befann sig tillsammans med familjen upplevdes samhörighet och välbefinnande. En god relation till sjuksköterskan betydde mycket för patienten i livets slutskede. En sämre relation till sjuksköterskan skapade känslor av att bli kränkt. Studien gav förståelse för vikten av att involvera patienten i sin egen vård. Studien bidrog även till en förståelse för betydelsen av att bekräfta varje patient som en individ.</p> / <p>Previous research showed that caring meetings with the nurse strengthened the patients self image and feelings of security. Uncaring meetings with the nurse created feelings of being broken. Patients wanted to be involved in their own care. Being next of kin to someone in the end of life was not easy. Little was written about patient experiences in the end of life. The aim of the study is to describe the patient’s experiences of being in the end of life. The study was a literature review with a qualitative approach. Differences and similarities in the results of the studies were compared in the analysis. The results showed that an adapted care was of importance for patient feelings of independence. Feelings of togetherness and wellbeing arose when the patients were together with the family. A good relation with the nurse meant a lot for the patient at the end of life. A bad relation to the nurse could create feelings of being violated. The study created an understanding of the importance to offer patients an opportunity to be involved in their own care. Furthermore it gave an understanding of the importance to confirm the patient as an individual. </p>

<p>Aim. The aim of the study is to highlight Dutch nurses’ opinions about assisted death. Background. Since 2002 it has been legally justified for physicians to assist a patients’ death in the Netherlands. Public and ethical debate, scientific research, guidelines for prudent practice and legislatures focus predominantly on the role of physicians, seemingly assuming that the tasks of other health care professionals are less important. Though, the nurse cares for the patient on a daily basis, and has a close relationship with the terminally ill and their next of kin. Method. A qualitative method was used. Twelve nurses were used in the study, and they received a questionnaire with open questions where they were supposed to motivate their personal opinions related to assisted death. Results. Three main categories (and seven sub categories) highlights the nurses’ opinions; the meeting (discussion, next of kin), inner conflicts (religion, participation) and influences (pain relief, living will, laws and criteria). Conclusions. The Swedish taboo concerning assisted death need to be removed. The quality of the palliative care is decisive of when the patients’ request of assisted death is putted. Continuous discussion elicits underlying factors of why a request of assisted death is putted.</p> / <p>Syfte. Syftet med studien är att belysa nederländska sjuksköterskors personliga åsikter om dödshjälp. Bakgrund. I Nederländerna har det varit lagligt för läkare att assistera en patients död sedan 2002. I den allmänna och etiska diskussionen kring beslut som rör läkarassisterad död, i forskningen, i riktlinjer och i lagstiftning fokuseras på läkarens roll, övriga vårdgivares arbetsuppgifter antas vara mindre viktiga. Detta antagande kan ifrågasättas då sjuksköterskan vårdar patienten dagligen, ofta i en nära relation till den sjuke och hans eller hennes närstående i livets slutskede. Metod. För att uppnå studiens syfte användes en kvalitativ metod. I studien ingick tolv nederländska sjuksköterskor som fick ett frågeformulär med öppna frågor där de skulle motivera sina personliga åsikter till dödshjälp. Resultat. Resultatet visar tre huvudkategorier (och sju underkategorier) som belyser sjuksköterskans åsikt; mötet (diskussion, anhöriga), inre konflikter (religion, deltagande) samt influenser (smärtlindring, testamente, lagar och kriterier). Konklusion. Den svenska tabun kring läkarassisterad död bör tas bort för att utveckla debatten. Kvaliteten på den palliativa vården avgör ofta om och när patientens förfrågan om dödshjälp kommer. Kontinuerlig diskussion tydliggör underliggande faktorer till varför en förfrågan om dödshjälp ställs.</p>

Hope is considered to have a positive influence upon health. Cancer patients may enter hospice care after a rigorous course of medical treatment, having hoped for a cure or long remission. While the hope for cure is important, hope is no less important at the end of life when the goal of care is quality of life. This study examined the relationship between hope and quality of life in hospice patients with cancer. Thirty-one patients with cancer, who were alert, oriented, living with a caregiver, and aware of their diagnosis were sampled from a hospice program. The instruments used were the Herth Hope Index (HHI) and the Hospice Quality of Life Index (HQLI). The HHI total scores and the HQLI total scores were significantly positively correlated (r = .356; p = .049). This finding suggests that hope is a different concept than quality of life but that these concepts are related. A high level of hope (mean of 42.84 out of a possible 48) was maintained by subjects. The HQLI subscale of social/spiritual well-being and the total HHI scores were also positively correlated (r = .51; p = .003) suggesting that hope can be influenced by this aspect of quality of life which includes a relationship with God, support from family, friends and healthcare providers, and spiritual support from the healthcare team. The findings of this study underscore the importance of the healthcare provider in promoting hope at the end of life, and suggests that hope is not taken away by admission into a hospice program.

The purpose of this study was to describe the extent and nature of CAM services that are provided and used in Texas hospices. The study investigated the significance of hospice setting characteristics such as age, geographic location, agency type, profit orientation, Medicare certification, and number of patients served as they relate to the likelihood of offering CAM, using a robust methodological and analytical strategy. Data was collected via self-administered mail surveys to 369 hospice directors in the state of Texas. A total usable response rate of 35.7% was obtained after an initial and one follow-up mail-out. A majority (N = 62, 56.4%) of hospices provided at least one type of CAM to their clients; however, a sizeable proportion of patients did not utilize the provided CAMs. The most frequently offered CAMs included massage, music, relaxation, spiritual healing and pet therapies with females and non-Hispanic whites being the most frequent users of these CAM services. Among CAM providers, short length of stay and funding were the primary obstacles to CAM provision, with most hospices relying on a combination of general hospice funds and volunteers to sustain the delivery of CAM services. The odds of offering CAM in ‘not-for-profit’ hospices were approximately four times higher than in ‘for-profit’ hospices (OR = 3.77, p = 0.022), while the odds of offering CAM increased by 13% for every 100 patients served by hospices (OR = 1.131, p = 0.015). Other hospice setting characteristics were not significantly related to CAM provision. In conclusion, a majority of hospices offered CAM services to their clients, although many patients are not utilizing these services. This observation might be connected with the fact that most CAM services are currently not being reimbursed through the Medicare Hospice Benefit, a government program that a majority of hospices depend upon for the coverage of substantial portions of their end-of-life services. Nevertheless, our study showed that CAM provision is related to the number of patients served and profit orientation status, but is not related to other measured characteristics of hospices. / text

Family caregivers encounter immense negative consequences including decreased quality of life and increased rates of morbidity and mortality that stem from physical burdens, emotional distress, depression, social isolation, and loss of financial security. Although communication is an important aspect of caregiving, communication tasks are reportedly difficult for end-of-life family caregivers. The goal of this study was to explore the variety of communication stressors experienced by end-of-life family caregivers to gain insight into the communication tasks caregivers perceive as most difficult and the reasons why. Qualitative data was achieved through in-depth, face-to-face interviews with 40 caregivers currently providing care for a family member diagnosed with Alzheimer’s disease and related dementias (n=20; ADRD) and Glioblastoma (n=20; brain tumor [GBM]). A grounded theory approach was employed to gain insight into end-of-life family caregiver communication experiences. The results revealed that communication is perceived as a burden for end-of-life family caregivers. Not only does communication burden exist, end-of-life family caregivers experience immense tension and stress regarding a variety of relational contexts when communicating with the care recipient, others (family, friends), and clinicians. The results further revealed that communication burden stems from the caregiver’s attempt to negotiate between two opposing extremes: a desire to protect the patient and others versus a need to protect oneself. Thus, internal tension occurs when end-of-life family caregivers contemplate whether and how to engage in difficult conversations, and then again when following through. The presence of these contradictory tensions induced the emergence of barriers and therefore communication burden within various aspects of the end-of-life caregiver experience. Added insight into communication burden was achieved through a supplementary scale development study in a sample of ADRD and oncology end-of-life caregivers (N=263), which revealed communication burden as significantly associated with caregiver burden and quality of life. Implications for the advancement of interpersonal and health communication theory as well as practical tailored interventions targeting end-of-life family caregivers are discussed.

While the duration of the cancer illness may be shorter than that of other serious diseases, such as Alzheimer's disease, cancer caregivers provide many more hours of care during a week. Research directed at the intensive experience of caregiving of hospice cancer patients is needed as there is limited research of predictors of hospice cancer caregiver depression symptomatology. The purpose of the study was to examine predictors of depression symptomatology in caregivers of hospice cancer patients. A secondary analysis was conducted using baseline assessment data of patients and caregivers from a larger study of patient/caregiver dyads from two large hospices (NIH 5R01 NR 008252). Statistical methods included Pearson's, point bi-serial, and phi correlation. Multiple regression and logistic regression were used to examine prediction. The variables of wife caregiver, patient symptom global distress, and caregiver support satisfaction accounted for 13% of the variance in caregiver depression symptomatology as measured by the CES-D 10 (M = 2.97, SD = 2.15) in the patient/caregiver dyad sample (n = 578). Approximately 38% of the 578 caregivers had CES-D 10 scores of 4 or greater upon patient admission to hospice. CES-D 10 scores 4 or greater have been found predictive for a diagnosis of depression (Irwin, Artin and Oxman, 1999). Examining odd ratios, wife caregiver was positively predictive and caregiver support satisfaction was negatively predictive of CES-D 10 scores of 4 or greater. The results support the need for depression symptom screening of caregivers, the importance of support satisfaction and the need to examine additional caregiver factors, along with patient factors, that may contribute to depression symptomatology in caregivers of hospice cancer patients.

This research investigated the racial/ethnic differences in hospice utilization and the effect of hospice in reducing the risk of hospital death at the end of life among non-Hispanic Black and non-Hispanic White dual-eligible (Medicare and Medicaid) older adults residing in a nursing home setting. The final study population included 30,765 non-Hispanic Black and non-Hispanic White nursing home residents who died between state fiscal years 2000-2002 in Florida.The behavioral model of health services use successfully predicted group membership in hospice use. In the full model, seven variables - female gender, non-Hispanic White race/ethnicity, being married, urban area of residence, and cancer and dementia/Alzheimer's disease as causes of death -- predicted increased likelihood of hospice use. This study also found that race/ethnicity moderates the strength of the effect of the illness on the likelihood of using hospice. Among residents who died of cancer, no difference in hospice use was found between the two racial/ethnic groups while hospice utilization rate among non-cancer residents was lower for non-Hispanic Blacks than non-Hispanic Whites.The same predisposing, enabling and need factors tested in predicting hospice use were examined for association with the probability of survival time since hospice admission. The poor model fit and the small number of factors found to significantly affect the probability of survival time from the initial hospice enrollment suggest that the survival time might be influenced by external factors other than covariates examined in this study.This study found hospice to be a powerful predictor of place of death among nursing home residents. After controlling for other factors, hospice nurs ing home residents were 91 percent less likely to die in a hospital. At the same time, non-Hispanic Black residents were still 76 percent more likely to die in a hospital even after adjusting for the effect of hospice use and other variables.

Bakgrund: Antalet patienter med cancerdiagnos i världen, förväntas öka med 70 % under de kommande 20 åren. Minst en av tre som lever i Sverige idag, kommer någon gång under sitt liv att få en cancerdiagnos. Många patienter med cancer vill leva sin sista tid och slutligen dö i sitt hem. Hemmiljön representerar trygghet och möjlighet att råda över sin tillvaro. En god eller dålig livskvalitet speglar i stora drag människors tillfredsställelse med livet. Syftet var att beskriva upplevelser i hemmiljön som har betydelse för livskvalitet hos patienter med cancersjukdom i livets slutskede. Metod: Litteraturstudie av åtta vetenskapliga artiklar gjorda i Sverige. Resultat: Patienternas upplevelser presenteras som en huvudkategori med fyra subkategorier. Att det fanns en framtid, att allt var som vanligt, omgivningens stöd samt egenkontroll, var upplevelser i hemmiljön som hade betydelse för livskvaliteten och kan leda till inre frid. Slutsats: Varje patient är unik och har olika behov som tar sig olika uttryck, och som omgivningen måste ta hänsyn till. Med personcentrerad vård och fokus på de resurser som finns kvar hos individen, ökar vårdens kvalitet och säkerhet. / Background: The number of patients diagnosed with cancer in the world, is expected to increase by 70 % over the next 20 years. At least one of 3 persons living in Sweden today will sometime, during his life receive a cancer diagnosis. Many patients want to spend their final days in their home. The home environment represents security as well as the opportunity to decide in daily matters. A good or bad quality of life, reflect people's satisfaction with life. The aim was to single out those vital elements in the home environment that contribute most to the quality of life in patients with end - stage cancer. Method: A literature study, based on eight scientific studies, originating in Sweden. Results: Patients experiences present as a main theme with four subcategories. A sense of normality and of having a future, having support from their environment and being able to decide for oneself in daily matters, were important factors deciding the quality of life and peace of mind. Conclusions: Each patient has unique needs that must be considered by the environment. A person- centered care focusing on the patient´s remaining abilities increases the quality and safety of treatment.

Sammanfattning/Abstract Bakgrund: Många patienter väljer i dag att vårdas hemma under sin sista tid i livet istället för som tidigare på sjukhus eller ett boende. Den palliativa hemsjukvården blir därför alltmer utbredd vilket samtidigt innebär att allt större krav ställs på de närstående som då ofta intar en vårdande roll.  Syfte: Syftet är att beskriva hur närstående upplever sin vårdande roll i den palliativa hemsjukvården. Metod: En litteraturstudie baserad på tio resultatartiklar som består av både kvalitativa och kvantitativa studier där vi kom fram till tre teman som handlade om den närståendes upplevelser av den vårdande rollen, närståendes vårdande roll och den sjuke och närståendes vårdande  roll och sjuksköterskan.  Resultat: Många närstående fann både fördelar och nackdelar med den vårdande rollen och att den innebär en stor omställning. Många närstående kände sig mer eller mindre tvingade att ta över den vårdande rollen.Tillräcklig information och en god kommunikation ansågs av de närstående som en mycket viktig faktor.   Diskussion: Att vårda en svårt sjuk anhörig är ofta en belastning. Detta kräver att vårdpersonalen är medvetna om de närståendes svåra situation och upplevelsen av denna. Det är även viktigt att uppmärksamma närståendes behov av information och att ha en bra kommunikation för att vi som sjuksköterskor ska kunna stödja de närstående i deras vårdande roll. Nyckelord: Anhörig vårdare, vårdande roll, palliativ vård, döende patienter, vård i livets slut Keywords: Family caregivers, caring role, palliative care, terminally ill, end of life care