Context Changes Choices: A Prospective Study of the Effects of Hospitalization on Life-Sustaining Treatment Preferences

Ditto, Peter H.; Jacobson, Jill A.; Smucker, William D.; Danks, Joseph H.; Fagerlin, Angela

doi:10.1177/0272989x06290494

Cited by 139 publications

(114 citation statements)

References 29 publications

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“…15 Individuals may have different treatment preferences when they are healthy to those when they are ill and, as a consequence, choices about what treatment is desirable and acceptable may change over the course of their illness. 16,17 Although GPs are well positioned to initiate ACDs due to their ongoing relationship with their patients, how such information is consistently shared across health care settings remains problematic. Numerous approaches to sharing ACDs have been investigated both in Australia and internationally, but there has been limited universal uptake due to a lack of systematic processes for embedding them into routine practice at an institutional level and across health jurisdictions.…”

Section: Discussionmentioning

confidence: 99%

Palliative care health professionals’ experiences of caring for patients with advance care directives

Johnson

Singer

Masso³

et al. 2015

Aust. Health Review

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Objective. To explore the health professionals' (HPs) perceptions and experiences of advance care directives (ACDs) and advance care planning in Australian palliative care services.Methods. A nationwide survey of 105 palliative care services was conducted, with two HPs from each service invited to participate. A qualitative analysis of open responses about advance care planning was undertaken.Results. Sixty questionnaires were returned with open responses. Most responders were nurses (75%), aged 40 years (80%) and with a mean of 12 years palliative care experience. Data were grouped into four key themes: (1) the ACD; (2) the process of developing ACDs; (3) the process of using ACDs; and (4) the consequences of having ACDs. Participants were positive about advance care planning, commenting that ongoing communication about end-of-life care ensures mutual understanding between patients, family and HPs. Provision of care was considered easier and more efficient with an ACD in place. ACDs were perceived to reduce distrust and conflict between family, friends and HPs, and promote communication. Suboptimal documentation, clarity and explicitness limited the usefulness of ACDs when they were available.Conclusions. Advance care planning benefits HPs, patients and their family. To maximise these benefits, ACDs need to be clear, comprehensive, medically relevant and transportable documents.What is known about the topic? Ideally, advance care planning encompasses the identification and documentation of a person's preferences for future medical treatments and care in preparation for an occasion when the person cannot express their values and wishes. The uptake and practice of advance care planning is inconsistent, and the extent to which it is used by health professionals and patients is variable. Many people are cared for at the end of life in specialist palliative care services, but the intersection between palliative care and advance care planning remains under-researched. What does this paper adds? ACDs facilitate communication and advance care planning; help establish trust between health professionals, patients and their families; and make multiple aspects of care easier for HPs. Processes surrounding ACDs, particularly inadequate documentation, limit adherence and application. What are the implications for practitioners? Clear communication is necessary for effective ACD development and application. The presence of an ACD makes communication and advance care planning easier, and improves trust between HPs, patients and their family. To be useful, ACDs must be clear, comprehensive, medically relevant, transportable documents.

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Section: Discussionmentioning

confidence: 99%

Palliative care health professionals’ experiences of caring for patients with advance care directives

Johnson

Singer

Masso³

et al. 2015

Aust. Health Review

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“…2,16,17 This concern is based on the findings that patients with declining health have been shown, when asked about hypothetical future situations, to become more accepting of life-sustaining treatment. 18 Such findings support the notion that, as patients adapt to their declining health, they become more willing to undergo interventions to maintain that health state and/or to accept further diminishing states of health.…”

Section: Changes In and Variability Of Preferences At The Very End Ofmentioning

confidence: 99%

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

2008

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BACKGROUND: Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. OBJECTIVE:To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. DESIGN:Qualitative cross-sectional study. PARTICIPANTS:Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. APPROACH:In-depth interviews were conducted 6 months after the patient's death with 64 caregivers.Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient's experiences at the end of life. Additional questions asked about how decisions were made, patient-caregiver, patient-clinician, and caregiver-clinician communication. MAIN RESULTS:Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient's illness, and 4) difficulties with patientcaregiver communication. DISCUSSION:The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient-caregiver communication.KEY WORDS: end-of-life care; caregivers; advance care planning.

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“…Our major findings are unchanged under this interpretation, yet we prefer it because statements of preference are often unreliable. In the course of an actual medical decision-making process, patients' expressed preferences change over time and vary with circumstances Ditto et al 2006;Kressel and Chapman 2007;Loewenstein 2005). …”

Section: Model-the Structural Equations Describing the Model Arementioning

confidence: 99%

“…Thus spouses in opposite sex marriages may differ in their end-of-life preferences, and assuming similarity may result in problematic health care decisions by both male and female surrogates. Our results suggest that male surrogates are as poor at predicting their wives' preferences as female surrogates are at predicting their husbands' preferences.Second, prior research has documented that end-of-life preferences vary with health status (Ditto et al 2006;Fried et al 2007;Voogt et al 2005). The sicker the patient, the less likely he or she is to prefer continued curative treatment.…”

mentioning

confidence: 99%

Do Older Adults Know Their Spouses' End-of-Life Treatment Preferences?

Moorman¹,

Hauser²,

Carr³

2009

ICPSR Data Holdings

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When terminally ill patients become mentally incapacitated, the patient's surrogate often makes treatment decisions in collaboration with health care providers. We examine how surrogates' errors in reporting their spouse's preferences are affected by their gender, status as durable power of attorney for health care (DPAHC), whether the surrogate and spouse held discussions about end-of-life preferences, and the spouse's health status. We apply structural equation models to data from 2,750 married couples in their mid 60s who participated in the 2004 wave of the Wisconsin Longitudinal Study. Surrogates reported their spouse's preferences incorrectly 13 and 26 percent of the time in end-of-life scenarios involving cognitive impairment and physical pain, respectively. Surrogates projected their own preferences onto the spouse. Similar patterns emerged regardless of surrogate gender, surrogate status as DPAHC, marital discussions about end-of-life, or spousal health status. We discuss implications for the process of surrogate decision-making and for future research.As recently as 1960, nearly all physicians were opposed to telling their patients that they had terminal cancer, because they believed that the knowledge would have shattering psychological effects (Oken 1961). Subsequent psychosocial research showed that the awareness that one is dying does not emotionally harm a patient (Kübler-Ross 1969). Physician attitudes evolved such that the standard for care is now full disclosure and collaboration among patients, health care providers, and surrogate decision-makers in cases where the patient is unable to convey his or her own treatment preferences (Brody 1997;Novack et al. 1979;Snyder and Leffler 2005). Changes in physician attitudes have occurred alongside policy changes: In 1990, Congress passed the Patient Self-Determination Act (PSDA) to ensure that dying people have a greater say in their care. Under this law, federally funded health care providers are required to give patients information that helps them to execute a living will and to legally appoint a surrogate, known as a durable power of attorney for health care (DPAHC), to oversee their care in the event of decisional incapacitation.A concern of patients and health care providers is that surrogates accurately convey the patient's wishes. An effective surrogate, according to bioethicists, is someone who can apply the standard of substituted judgment (President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1983). Substituted judgment occurs when the surrogate makes the medical decision that the patient would have made if he or she (Shalowitz, Garrett-Mayer, and Wendler 2006). Surrogates often presume (erroneously) that the patient's preferences are identical to their own: Surrogates' own preferences account for more of the variance in their decisions than do the patients' actual preferences (Bar-Tal, Barnoy, and Zisser 2005;Fagerlin et al. 2001;Pruchno et al. 2005). Study AimsOur primary goal ...

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Context Changes Choices: A Prospective Study of the Effects of Hospitalization on Life-Sustaining Treatment Preferences

Cited by 139 publications

References 29 publications

Palliative care health professionals’ experiences of caring for patients with advance care directives

Palliative care health professionals’ experiences of caring for patients with advance care directives

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

Do Older Adults Know Their Spouses' End-of-Life Treatment Preferences?

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