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.

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

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.

<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.

No description available.