Ethical problems in end-of-life decisions for elderly Norwegians

Norwegian health professionals, elderly people and family members experience ethical problems involving end-of-life decision making for elders in the context of the values of Norwegian society. This study used ethical inquiry and qualitative methodology to conduct and analyze interviews carried out with 25 health professionals, six elderly people and five family members about the ethical problems they encountered in end-of-life decision making in Norway. All three participant groups experienced ethical problems involving the adequacy of health care for elderly Norwegians. Older people were concerned about being a burden to their families at the end of their life. However, health professionals wished to protect families from the burden of difficult decisions regarding health care for elderly parents at the end of life. Strategies are suggested for dialogue about end-of-life decisions and the integration of palliative care approaches into health care services for frail elderly people.     

Elders' and family members' perspectives in planning for hospital discharge

When elders are unable to participate in discharge planning owing to physical or cognitive impairments, clinicians often work with family members instead. Previous studies on community-dwelling elders and their family members found differences between the elder's and family member's rating of functional status (Rothman, Hedrick, Bulcroft, Hickman, & Rubinstein, 1991). Magaziner, Simonskck, and Kashner (1988) reported that family members who did not live with the elder tended to rate them as less impaired than what the older persons rated themselves. Yet, little is known about the extent to which elders' and family members' perspectives concur with respect to discharge planning. Identifying both discrepancies and areas of agreement is essential in assisting elders and their families in planning for their future needs and evaluating the options available to them. The purpose of this study was to determine the extent to which family members' expectations regarding postdischarge needs agreed with those of elders hospitalized for an acute episode of a chronic illness.     

Disorders of Consciousness and Disordered Care: Families,Caregivers, and Narratives of Necessity

By their nature, care decisions for patients with severe disorders of consciousness must involve surrogates. Patients, so impaired, have lost their decision-making capacity and the ability to direct their own care. Surrogates—family members, friends, or other intimates—must step in and make decisions about ongoing care or its withdrawal. This article shares the narrative experiences of these surrogate decision makers as they encounter the American health care system and accompany patients from injury through rehabilitation. Through their perspectives, the article considers challenges to ongoing care and rehabilitation that are a function of a prevailing medical infrastructure and reimbursement framework better suited to patients with acute care needs. Specific attention is paid to the ethical challenges posed by reimbursement strategies such as “medical necessity” as well as those proposed for the Affordable Care Act. The argument concludes that when it comes to care for a disorder related to consciousness, its provision is not discretionary, and its receipt is not an entitlement but a civil right.     

The pain experience of cognitively impaired nursing home residents: perceptions of family members and certified nursing assistants.

Pain in cognitively impaired nursing home (NH) elders is difficult to detect. We report the results of the qualitative interview portion of a larger study that characterized the pain experience of cognitively impaired NH residents. Interviews were conducted with 16 family members or friends and 11 certified nursing assistants (CNAs) of 20 cognitively impaired NH residents experiencing pain. Analysis of the interviews yielded themes in family and CNA perceptions of pain in cognitively impaired NH residents. Family members and CNAs concurred that knowing the resident's usual behavior and daily habits was essential to being able to detect pain in cognitively impaired NH residents. Although a majority of family members reported that their relative was "stoic" about pain expression prior to NH placement, personal care information and historical information were perceived as helpful by nursing staff members. CNAs used facial and eye cues to detect pain and pain relief in their assigned residents. In addition, CNAs reported specific pain management strategies for their residents. Major themes related to pain detection in cognitively impaired NH residents identified in this investigation include: (a) knowing the resident; (b) importance of family input about previous pain behaviors in knowing the resident; (c) CNA reliance on face and eye cues for pain detection, particularly with residents who were nonverbal; and (d) the prevalence of pain with caregiving activities. Information from multiple sources can improve pain management strategies for cognitively impaired NH residents.     

The psychosocial impact of recurrence on cancer survivors and family members: a narrative review

Title.  The psychosocial impact of recurrence on cancer survivors and family members: a narrative review.
Aim.  This paper is a report of a review undertaken to identify, critically analyse and synthesize the psychosocial experience of cancer recurrence for survivors and family members.
Background.  Recurrence of cancer is an event after which life changes for families. Individuals move from being short- or long-term survivors of cancer to being patients once more. Families move from a state of fear of recurrence to one of uncertainty and distress as a result of the new crisis.
Data sources.  MEDLINE, CINAHL and CancerLit databases were searched for the period January 1980–2007. Reference lists of papers were conducted for relevant studies. The search terms recurrence, recurrent cancer, experience, survivor and family were searched for separately and in combination.
Review methods.  A narrative review was conducted. Data were categorized in terms of issues during survivorship and concerns after recurrence.
Results.  Three main categories were identified that explained survivors' and families' experiences of recurrent cancer: (1) fear of recurrence during survivorship, (2) when cancer recurs: families facing new challenges and (3) distress because of recurrence.
Conclusion.  Recurrence is a distressing experience for survivors and families because they have to face again psychosocial effects of cancer, such as uncertainty, distress and concerns about death. Care should not be addressed simply to survivors, but should include the general well-being of families beyond their survivorship and support to manage better psychosocial issues occurring when a member has a recurrence of cancer.     

Nursing Diagnoses of Burned Patients and Relatives' Perceptions of Patients' Needs

PURPOSE.  The aims of this study were to identify the nursing diagnoses of burn patients in the period 1 week before hospital discharge and to determine whether their relatives had similar perceptions of the patients' problems.
METHODS.  A qualitative case study was conducted with 10 burn patients and 10 family members. One week before hospital discharge, the nursing diagnoses of the patients and the relatives' perceptions of the patients' were identified and compared.
FINDINGS.  Thirty different diagnoses related to physical and psychosocial aspects were identified. The family members reported concerns mainly related to physical care, specifically wound care and prevention of infection, and psychosocial aspects, while patients were primarily concerned with the latter.
CONCLUSIONS.  Nursing diagnoses for these patients and their relatives' perceptions frequently overlapped; however, the emphasis of the families' attention was on the physical aspects.
IMPLICATIONS FOR NURSING PRACTICE.  Anticipating family members' perceptions about the patients' problems is important in order to promote strategies that will improve patient care after hospital discharge.     

When patients and families disagree

Advance care planning is meant to safeguard the patient's autonomy when that individual is unable to make his or her own healthcare decisions. Yet, families do not always agree with the specific wishes of their family member when there is a need to make critical decisions, such as continuing treatment because of some new research protocol or providing comfort through palliative care. When there are patient-family disagreements, the decision-making process is even more complicated if the patient is fully able to participate because competent patients have the right to make their own healthcare decisions. In addition, family members may not agree with each other. Thus, even though healthcare providers want to respect their patients' wishes, they are uncertain about the most appropriate course of action. This article discusses why families and patients may disagree, describes relevant ethical perspectives for understanding the issues, and identifies possible strategies to help nurses address these ethical dilemmas. Valuing the patient as a person, the vulnerability of the patient, whose interests should prevail, and quality of life are pertinent and overlapping ethical issues in this case. Possible strategies that nurses can implement to address the "thorny" issues raised by patient-family disagreements include helping the patient to remain in control, facilitating responsible decision making, requesting an ethics consultation, and requesting a palliative care consultation.     

Accommodating the stranger en casa: how Mexican American elders and caregivers decide to use formal care

Mexican American elders have higher levels of functional impairment and chronic illness, yet they use formal home care services less than do non-Hispanic White elders. This article describes the processes by which Mexican American elders and their caregivers decide to use home care services. Interviews were conducted with Mexican American elders (n = 11) and family caregivers (n = 12) for a sample of 23 individuals. The emerging substantive grounded theory included three stages that described the process of deciding to use home care services: Taking Care of our Own, Acknowledging Options, and Becoming Empowered. The processes describe how Mexican American families eventually accept home care services while maintaining their cultural norm of taking care of elders. The theory gives voice to both elders and caregivers in this process, adds to extant knowledge, and shapes interventions to support traditional Mexican American family values such as elders' staying at home as long as possible. The theory meets nursing's goals of reducing health care disparities by improving or sustaining elders' health and functional ability, decreasing the caregiving burden, and reducing health care costs.     

Decision-making for acutely ill nursing home residents: nurses in the middle

Title.  Decision-making for acutely ill nursing home residents: nurses in the middle.
Aim.  This paper is a report of a study to generate a model of nursing behaviours and social processes inherent in decision-making for acutely ill nursing home residents.
Background.  Most research concerning clinical decision-making in nursing homes focuses on the perspectives of doctors. Much less is known about the perspectives and actions of nurses with regard to decision-making, despite the centrality of their roles in nursing homes.
Method.  Grounded theory was used. Data were collected in 2004 in four nursing homes in the United States of America using in-depth, semi-structured interviews, 74 hours of non-participant observation and informal conversational interviews with key nursing staff involved in decision-making.
Findings.  Nurses strive to create a plan of care acceptable to family members and doctors, consistent with wishes of residents and most comfortable for residents. A unifying theme of satisfying all sides emerged as representative of the negotiation strategies used by nurses to address these competing points of view. Four phases in this negotiation occurred: weighing the significance ; notifying the family ; feeling it out ; and playing the middleman . The outcome was either a decision for life-prolongation or for palliative care.
Conclusion.  Decisions for nursing home residents are complex and involve weighing and balancing the interests and preferences of many concerned participants, including residents, families and doctors. This process requires skill in clinical judgment, communication and collaboration.     

Decision conflict and regret among surrogate decision makers in the medical intensive care unit

IntroductionFamily members of critically ill patients in the intensive care unit face significant morbidity. It may be the decision-making process that plays a significant role in the psychological morbidity associated with being a surrogate in the ICU. We hypothesize that family members facing end-of-life decisions will have more decisional conflict and decisional regret than those facing non–end-of-life decisions.MethodsWe enrolled a sample of adult patients and their surrogates in a tertiary care, academic medical intensive care unit. We queried the surrogates regarding decisions they had made on behalf of the patient and assessed decision conflict. We then contacted the family member again to assess decision regret.ResultsForty (95%) of 42 surrogates were able to identify at least 1 decision they had made on behalf of the patient. End-of-life decisions (defined as do not resuscitate [DNR]/do not intubate [DNI] or continuation of life support) accounted for 19 of 40 decisions (47.5%). Overall, the average Decision Conflict Scale (DCS) score was 21.9 of 100 (range 0-100, with 0 being little decisional conflict and 100 being great decisional conflict). The average DCS score for families facing end-of-life decisions was 25.5 compared with 18.7 for all other decisions. Those facing end-of-life decisions scored higher on the uncertainty subscale (subset of DCS questions that indicates level of certainty regarding decision) with a mean score of 43.4 compared with all other decisions with a mean score of 27.0. Overall, very few surrogates experienced decisional regret with an average DRS score of 13.4 of 100.ConclusionsNearly all surrogates enrolled were faced with decision-making responsibilities on behalf of his or her critically ill family member. In our small pilot study, we found more decisional conflict in those surrogates facing end-of-life decisions, specifically on the subset of questions dealing with uncertainty. Surrogates report low levels of decisional regret.     

A comparison between the ethics of justice and the ethics of care

The parameters of the problem within which the principal aim of the present article will be addressed can be described as follows. When making ethical decisions there are different perspectives that health care professionals may use. This may lead to conflict and insufficient co-operation between the members of the health team. Two of these perspectives are the ethics of justice and the ethics of care. The ethics of justice constitutes an ethical perspective in terms of which ethical decisions are made on the basis of universal principles and rules, and in an impartial and verifiable manner with a view to ensuring the fair and equitable treatment of all people. The ethics of care, on the other hand, constitutes an ethical approach in terms of which involvement, harmonious relations and the needs of others play an important part in ethical decision-making in each ethical situation. To seek some sort of way of avoiding conflict and promoting a mutual understanding about ethical decisions in the health team, there is a need to examine the ethics of justice and ethics of care. In order to understand the ethics of justice and ethics of care, the purpose of this article is to compare the two ethical perspectives. It is argued that the ethics of justice and the ethics of care represent opposite poles. If the members of the health team were to use only one of these two perspectives in their ethical decision-making, certain ethical dilemmas would almost certainly remain unresolved. Both the fair and equitable treatment of all people (from the ethics of justice) and the holistic, contextual and need-centred nature of such treatment (from the ethics of care), ought therefore to be retained in the integrated application of the ethics of justice and the ethics of care.     

Living with terminal illness: patient and family experiences of hospital end-of-life care

AIM: The study explored terminally ill patients' and their families' experiences of hospital end-of-life care. DESIGN: A qualitative approach--interpretive phenomenology--was applied prospectively. Sample and setting. Ten patients and their closest family members were recruited in one Swiss university hospital. METHODS: Data collection included repeated observations, conversations with patients, and interviews with family members. FINDINGS: People led unique lives; when a terminal illness intruded and during hospital stays, they continued to live their particular life. The hospital was experienced differently, as prison, heaven, or necessary sojourn. A caring stance of the professionals was crucial to patients' and families' sense of being well cared for. When care providers lacked skills or did not recognize patients and family members as persons, they suffered. In contrast, adequate care interventions improved their quality of life. CONCLUSIONS: The experience of being in the hospital cannot be separated from patients' and families' life stories.     

A complex elder care simulation using improvisational actors

Complex simulations can facilitate students' synthesis of knowledge. Simulations of cognitively impaired elders provide nursing students the opportunity to use critical thinking and clinical decision-making skills in complex patient care situations. The authors report their experiences in designing, implementing, and evaluating a simulation on cognitive problems in elders using actors. This simulation required third-year baccalaureate nursing students to differentiate delirium from dementia, identify symptoms of heart failure, and address a family member's concerns.     

The association between knee temperature and pain in elders with osteoarthritis of the knee: a pilot study

BACKGROUND: Osteoarthritis is a highly prevalent, disabling condition that causes significant pain and suffering among older adults. Cognitively impaired elders are as susceptible to osteoarthritis as their peers. However, since they have diminished ability to communicate their pain, an alternative method to detect osteoarthritis pain in cognitively impaired elders is urgently needed. Because the late stages of osteoarthritis involve joint inflammation with a mild increase in local temperature, skin surface temperature might reasonably be expected to serve as a proxy measure of osteoarthritis pain. If knee surface temperature could be shown to predict pain in cognitively intact elders, it could be used as a proxy measure of pain for cognitively impaired elders. AIM: To test this, the study reported here assessed the relationship between knee surface temperature and pain in cognitively intact elders with osteoarthritis of the knee. METHODS: We recruited 12 cognitively intact elders with documented osteoarthritis of the knee who lived in retirement apartments. Elders' pain and knee temperature were measured three times on three separate occasions. Osteoarthritis pain of the knee was measured using the Knee Pain Scale and the Western Ontario and McMaster Osteoarthritis Index pain subscale. A YSI Model 4000 Dual Channel Display Telethermometer was used to measure knee temperature. RESULTS: We found no significant associations between knee temperature and any of the pain measures used, with one exception. However, body mass index, amount of pain medication used and activity level observed during the interview were significantly related to elders' pain. CONCLUSION: Knee temperature does not appear to predict knee pain in elders with osteoarthritis of the knee. Body mass index, use of pain medication and activity level are better predictors of this.     

The vortex: families' experiences with death in the intensive care unit.

BACKGROUND: Lack of communication from healthcare providers contributes to the anxiety and distress reported by patients' families after a patient's death in the intensive care unit. OBJECTIVE: To obtain a detailed picture of the experiences offamily members during the hospitalization and death of a loved one in the intensive care unit. METHODS: A qualitative study with 4 focus groups was used. All eligible family members from 8 intensive care units were contacted by telephone; 8 members agreed to participate. RESULTS: The experiences of the family members resembled a vortex: a downward spiral of prognoses, difficult decisions, feelings of inadequacy, and eventual loss despite the members' best efforts, and perhaps no good-byes. Communication, or its lack, was a consistent theme. The participants relied on nurses to keep informed about the patients' condition and reactions. Although some participants were satisfied with this information, they wishedfor more detailed explanations ofprocedures and consequences. Those family members who thought that the best possible outcome had been achieved had had a physician available to them, options for treatment presented and discussed, andfamily decisions honored. CONCLUSIONS: Uncertainty about the prognosis of the patient, decisions that families make before a terminal condition, what to expect during dying, and the extent of a patient s suffering pervade families' end-of-life experiences in the intensive care unit. Families' information about the patient is often lacking or inadequate. The best antidote for families' uncertainty is effective communication.