Blood and marrow transplantation (BMT) has become an increasingly acceptable treatment for children with life threatening malignant diseases. Survival rates for transplant recipients vary from 23% to 63%. Children with complications from BMT, typically die in the hospital after a prolonged stay. The parental decision to allow a child to die a natural death is typically made in an aura of emotional duress and bewilderment at the complexity and volume of new information that must be assimilated.The purpose of this study was to describe the process of parental decision making for Do Not Resuscitate (DNR) or to withdraw life support in pediatric BMT.The framework for this study was developed from the author's epistemology that blends neo-modernism (recognition of individual uniqueness yet acknowledgment that certain underlying universal principals exist) with the idea that the nature of all things may be viewed as an ongoing, self-constructing process.Grounded theory methodology was used. The sample (determined through theoretical sampling) consisted of seven parents of children who died following BMT and for whom the parent made an end-of-life decision. Data was analyzed using constant comparative analysis, a method that combines both substantive and theoretical coding of data with a qualitative style of theory development.The realization of parental knowing was the process that parents used to navigate the human problem of having to make the end-of-life decision for their children who were dying following blood and marrow transplantation. This process consisted of four categories: Developing Trust, Committed to Seeing It Through, Facing My Worst Fear, and Acceptance of Self.The knowledge gained from this study will inform nurses who care for children who are dying following pediatric BMT. Strategies may be developed that will assist nurses to support the development of parental trust, to help sustain the commitment of parents as they move through the BMT treatment journey, and to assist parents as they face their worst fear. As a result, parents should be better able to achieve an acceptance for themselves that will facilitate a more satisfying experience of the ever changing process occurring in their own lives.

Syfte: Syftet med studien är att studera i hur stor omfattning patienter är omgivna av andra i dödsögonblicket i palliativ vård och undersöka om det finns formulerade omvårdnadsmål i patienters IVP gällande vården i livets slutskede. Metod: Studien är kvantitativ retrospektiv med deskriptiv och analytisk design. I studien ingår samtliga cancerpatienter (n= 316), som vårdats och dött på en vårdavdelning och ASIH (avancerad sjukvård i hemmet) i Stockholm samt registrerats i Svenska palliativregistret (n=295). Resultat: Studien visade att i åldersgrupperna 75-84 år och 85 eller äldre var det fler som dog utan någon närvarande vid dödsögonblicket än i övriga åldersgrupper. Patienter dör utan att någon närvarande vid dödsögonblicket i ungefär lika stor omfattning i urvalet som på övriga palliativa enheter i Sverige. Resultatet visade att 62 % av de granskade journalerna hade omvårdnadsmål dokumenterade i IVP. Konklusion: Studien visar att närvaron vid dödsögonblicket sjunker när åldern stiger och att patienter dör utan någon närvarande vid dödsögonblicket i samma omfattning i urvalet som på övriga palliativa enheter i Sverige. Studien klarlägger även bristen på omvårdnadsmål i patienters IVP, vilket belyser ett förbättringsområde för att säkerställa kvaliteten på vården av patienter i livets slutskede. / Aims: The aim was to study the extent to which patients were surrounded by others at the time of death in palliative care and examine whether there were individual care plans, (IVP) in the patients nursing documentation regarding End-of-Life Care. Method: The study is quantitative retrospective with descriptive and analytical design. And includes all cancer patients (n = 316) who received care and died on a palliative care unit ward and ASIH (advanced medical care at home) in Stockholm and was registered in the Swedish palliative registry (n = 295). Results: In the age groups 75-84 years and 85 years or older, patients are more likely to die without someone present than in the other age groups. Patients are dying without anyone present in the same extent as in other palliative care units around Sweden. Only 62% of the sample had nursing goals documented in the patients IVP. Conclusion: The study illustrates that patients are surrounded by others in the same extent as in other palliative care units around Sweden. The study clarifies the lack of nursing goals in patients IVP, which highlights an area for improvement to ensure the quality in the End-of-Life care.

BACKGROUND: Several people die every year. The numbers of deceased in Sweden were 91449 in 2008. This often brings bereavement for the relatives and in hospital with end-of-life care it can be important for the health professionals to support and also take care of the relatives. AIM: The aim of this study is to illuminate relatives’ experiences of the caring situation with end-of life-care when a close relative is dying METHOD: Literature review. A number of thirteen scientific articles were analyzed. These were previous research of both qualitative and quantitative methods. RESULT: The result shows that many relatives are in need of a good treatment from health professionals, where the treatment includes components like providing support, providing information, creating a good relationship and having a good communication. A trust in health professionals was important for the relatives because it brought knowledge that good care was provided to the patient. It also indicates that participation was important in end-of-life care. There was a safety in having someone at the relative´s side who could offer aid. A quiet and calm environment was positive. DISCUSSION: The nurse´s experience and knowledge about bereavement is an important part of the care providing to the relatives. / BAKGRUND: Varje år dör många människor och i Sverige dog 91 449 människor år 2008. Detta medför sorg för många närstående och medför även att vårdpersonalen har en stor del i att ge stöd och ta hand om de närstående samtidigt som de tar hand om vårdtagaren. SYFTE: Syftet är att belysa närståendes upplevelser av omvårdnadssituationen kring vården vid livets slut av en nära anhörig. METOD: Litteraturstudie. Tretton vetenskapliga artiklar analyserades. Dessa var tidigare forskning av både kvalitativa och kvantitativa studier. RESULTAT: Resultatet visar att många närstående är i behov av ett gott bemötande från vårdpersonal, där det med bemötande ingår komponenter som att ge stöd, att ge information, att skapa en god relation och att ha en god kommunikation. Ett förtroende för vårdpersonalen var viktigt för att närstående skulle veta att en god omvårdnad gavs till vårdtagaren. Det visar även på att delaktighet var betydelsefullt i vården vid livets slut. Det var en trygghet att ha någon vid sin sida som kunde erbjuda stöd. En lugn och behaglig miljö med hemtrevlig inredning var positivt. DISKUSSION: Sjuksköterskans erfarenhet och kunskap om sorg har en betydelse i hur närstående tas om hand.

Syfte: Syftet med studien var att beskriva föräldrars upplevelse kring när deras barn befinner sig i det terminala skedet av svår sjukdom eller trauma, och av den palliativa vård de erhåller. Ett ytterligare syfte var att kvalitetsgranska artiklarna utifrån datainsamlingsmetod. Metod: Den föreliggande litteraturstudien har en beskrivande design. Sökningar gjordes i databaserna PubMed och Cinahl med sökorden child, parent, experience, palliative care och death. Tretton artiklar valdes ut och bearbetades. Huvudresultat: Det framkom att föräldrar upplevde att vägen mot att förlora ett barn var en kaosartad och känsloladdad tid. De beskrev förlusten av kontroll, att vägra ge upp hoppet, svårigheterna med beslutsfattandet kring barnet samt vad som utmärker en god förälder i denna svåra tid. Upplevelsen av den pediatriska palliativa vården speglade vårdpersonalens förhållningssätt, där en god omvårdnad enligt föräldrarna handlade om en god kommunikation, kontinuitet i vårdteamet samt relationsskapande. Slutsats: Med vetskapen om vilken tid av känslomässigt kaos och sorg föräldrar upplever då de är på väg att förlora sitt barn, kan sjuksköterskan utveckla ett medmänskligt förhållningssätt gentemot dessa familjer. / Aim: The purpose of the study was to describe parental experiences of when their children are in the terminal stage of severe illness or trauma, and of the palliative care they receive. A further aim was to make a quality review of the articles by their data collection method. Methods: This litterature review has a descriptive design. Litterature searches were made in the databases PubMed and Cinahl, using the search terms child, parent, experience, palliative care and death. Thirteen articles were chosen and processed. Result: The study shows that parents experienced the path towards losing a child as a chaotic and emotional time. They described the loss of control, refusal to give up hope, the difficulties with the decision making process regarding the child and what factors define a good parent in these difficult times. The experience of the pediatric palliative care reflected health care professionals approach, where good care according to the parents includes good communication, continuity within the healthcare team and bond making. Conclusion: With knowledge of what time of emotional chaos and sorrow parents experience when they are about to lose their child, the nurse can develop a charitable approach towards these families.

Syfte: Att beskriva sjuksköterskans roll och upplevelser vid vård i livets slutskede. Syftet var även att värdera vilken betydelse datainsamlingsmetoden har för de inkluderade artiklarna. Metod: Beskrivande litteraturstudie baserad på 13 vetenskapliga artiklar som söktes i databaserna Cinahl och PubMed via Högskolan i Gävle. En metodologisk granskning av de ingående artiklarnas datainsamlingsmetod genomfördes. Resultat: Vård i livets slutskede krävde teamarbete där både vårdpersonal, patient och närstående ingår. Sjuksköterskans roll innefattade ett professionellt förhållningssätt där patient och närstående inkluderades som en helhet. Resultatet visade betydelsen av sjuksköterskans närvaro och lyhördhet i omvårdnaden men beskrev även vikten av att bevara en balans mellan närvaro och distans. Sjuksköterskans upplevelser innefattade både positiva och negativa upplevelser, vilket påverkade sjuksköterskan både i privat- och arbetslivet. Tidsbrist och otillräcklig kunskap upplevdes som hinder för att uppnå god vård. Vård i livets slutskede upplevdes även som unikt och ett privilegium som gav sjuksköterskorna en personlig utveckling. Semistrukturerade intervjuer förekom i 6 artiklar och resterande 7 artiklar använde ostrukturerade intervjuer. Slutsats: Sjuksköterskans roll innefattar flera element och för att utöva god omvårdnad vid vård i livets slutskede krävs ett professionellt förhållningssätt. Vård i livets slutskede ger sjuksköterskan både positiva och negativa upplevelser. Vald datainsamlingsmetod i de inkluderade artiklarna ger djupare förståelse för det fenomen som studeras. / Aim: To describe the nurse's role and experiences of end-of-life care.The aim was also to value which significance data collection method have for the included articles. Method: Descriptive study based on 13 scientific articles which were searched in the databases Cinahl and PubMed through the University of Gävle. Methodological examinations of the included articles data collection method were performed. Results: End-of-life care required teamwork where healthcare professionals, patients and families are included. Nurse's role comprised a professional approach in which the dying patient and relatives were included as a whole. The results showed the importance of the nurse's presence and responsiveness of care but also described the importance of maintaining a balance between presence and distance. Nurses' experiences included both positive and negative experiences, which affected the nurse both in private and professional life. Lack of time and knowledge were experienced by nurses as barriers to achieve good care. End-of-life care was perceived also as unique and a privilege that gave nurses a personal development. Semistructured interviews occurred in 6 articles and the remaining 7 articles used unstructured interviews. Conclusion: Nurses role includes several elements and to practice good care in end-of-life care requires a professional approach. End-of-life care give nurses both positive and negative experiences. Selected data collection method in the included articles provides a deeper understanding of the phenomenon being studied.

<p>Problem: Family members of patients dying in the ICU are faced with agonizing dilemmas, the consequences of which might haunt them for a lifetime. Providing these family members with meaningful support and information is imperative. Nurses, by virtue of the time spent at the bedside and knowledge of patient and family needs, are in a unique position to support family members. The literature provides ample studies of how nurses perceive they are involved in EOL decision-making and several studies describing what family members perceive that they need from health care professionals in general. What is lacking is literature that describes the family members' perceptions of the specific strategies that nurses use to support their decision-making and how family members respond to these strategies. Because nurses might act on instinct, the strategies they use might or might not be helpful to family members. This study builds on prior work by exploring in greater depth the involvement of nurses in EOL decision-making, the specific strategies that family members perceive nurses using, and how family members respond to these strategies. This study aims to explore how family members respond to nursing strategies to support EOL decision-making, including family members perceptions of the strategies nurses use, how these strategies change over the trajectory of decision-making, and how these strategies affect their ability to make decisions consistent with the goals of the patient and their ability to cope with the stress of making EOL decisions.</p><p>Methods: Chapter two describes a systematic review of the literature that was conducted to define areas where research is needed. Chapter three describes a pilot case study that was conducted to determine the feasibility of conducting a prospective longitudinal study of family members making EOL decisions for their loved one in an ICU. Chapter four describes a prospective, longitudinal, qualitative descriptive study. In this study, the PI identified ICU patients who were likely to need complex decision-making and used narrative style interviewing techniques to explore the family members' perceptions of the strategies nurses use and the effectiveness of these strategies. Participants were recruited from a 16 bed adult medical ICU and a 16 bed surgical ICU at Duke Hospital, a tertiary care university hospital system.</p><p>Results: These studies identified three roles enacted by nurses: information broker, supporter, and advocate. While enacting these roles, nurses used a myriad of strategies categorized into five approaches: Demonstrate concern, build rapport, demonstrate professionalism, provide information, and support decision-making. This study provides empirical evidence that when interacting with family members of patients who were transitioning from curative to palliative care in the ICU, nurses used strategies that helped family members cope, to have realistic hope, to have confidence and trust, to prepare for the impending loss, to accept that their loved one was dying, and to make decisions. These findings also suggest that nurses were able to demonstrate flexibility in the use of the strategies, responding to the needs of the family members. </p><p>Although nurses used many helpful strategies to support family members, some nurses used strategies that negatively affected the family members' trust and confidence in the nurses, increased their difficulty coping, and, in some cases, might have delayed decision-making. Few of these strategies have been previously described in the nursing literature. </p><p>Summary: Knowledge from this study will pave the way for developing expert nursing practices for intervention studies targeting the areas identified as important by family members, most likely to improve their ability to make decisions on behalf of their loved one and to improve their well-being, and feasible in ICU environment.</p> / Dissertation

The idea about human’s merit, his worth, unique and oneness comparing him with things or other living creatures – that’s the phylosophy of human dignity in bioethics and biolaw. The aspect of principle of human dignity in bioethics and biolaw is analyzed invoking characters of human and his free will. Solving bioethical and biolaw problems, concepts of the beginning and the end of the life help us to reveal the importance of human dignity principle. In Bioethics and biolaw the principle of human dignity is read as a position which requires recognition of personality and free self-determination. / -.

Timely access to end-of-life care is a growing problem. One under-referred group is adults who die shortly after cancer diagnosis. This group’s challenges include a lack of definition for short diagnosis-to-death (SDTD), and inability of health care providers to identify risks for SDTD. Research indicates socioeconomic factors may influence access to end-of-life care, though how is unclear. This study used recursive partitioning methods to define SDTD for decedent adults with colorectal cancer and identify socioeconomic predictors of SDTD. SDTD was defined as less than 18.5 days. Socioeconomic predictors included long-term care residence and community-level characteristics such as education, immigration, marital status, Aboriginal status, and income. Results showed existing SDTD timeframes may be too long to adequately understand the population’s needs, and indictors of risk may be unique for this population. Additional research could establish consistency for defining SDTD and clarify the utility of socioeconomic predictors for mitigating barriers to care.

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