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Planning for end-of-life (EOL) and future treatment and care through advance care planning (ACP) is being increasingly implemented in different healthcare settings, and interest in ACP is growing. Several studies have emphasized the importance of relatives participating in conversations about wishes for EOL and being included in the process. Likewise, research has highlighted how relatives can be a valuable resource in an emergency setting. Although relatives have a significant role, few studies have investigated their perspectives of ACP and EOL conversations. This study explores relatives’ experiences of the benefits and disadvantages of having conversations about wishes for EOL treatment.
Methods
Semi-structured telephone interviews were held with 29 relatives who had participated in a conversation about EOL wishes with a patient and physician 2 years prior in a variety of Danish healthcare settings. The relatives were interviewed between September 2020 and June 2022. Content analysis was performed on the qualitative data.
Results
The interviews revealed two themes: “gives peace of mind” and “enables more openness and common understanding of EOL.” Relatives found that conversations about EOL could help assure that patients were heard and enhance their autonomy. These conversations relieved the relatives of responsibility by clarifying or confirming the patients’ wishes, and they also made the relatives reflect on their own wishes for EOL. Moreover, they helped patients and relatives address other issues regarding EOL and made wishes more visible across settings.
Significance of results
The results indicate that conducting conversations about wishes for EOL treatment and having relatives participate in those conversations were perceived as beneficial for both relatives and patients. Involving relatives in ACP should be prioritized by physicians and healthcare personnel when holding conversations about EOL.
The focus of this chapter is consent. Consent concerns the granting or withholding of permission to receive care. It may seem surprising that Ping Le would let a surgeon operate on her without wanting to know exactly what is going to happen to her, but some people do occasionally respond in this way – for example, when they can no longer tolerate a painful condition. But is this acceptable from a legal point of view? What if Ping Le had a mental health condition that affected her ability to understand the surgery being proposed? Who could consent for her in that case? This chapter addresses the legal requirements of consent for adults and children, and looks at the place of guardianship and advocacy in decision-making. It also considers the situation of people who are not mentally competent and may require emergency care or need to be restrained against their will.
Advance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.
Aim
We conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.
Methods
A search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.
Results
Of 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.
Conclusion
Future research should focus on ways to involve people with dementia in decision-making through supported means.
Evidence concerning when and in which manner older people living in nursing homes (NHs) would prefer to discuss advance care planning (ACP) is still scarce. This study explored the attitudes of NH residents and family members toward ACP and their opinions as to the right time to broach the subject, the manner in which it should be approached, and the content of ACP.
Methods:
This was a qualitative study using face-to-face interviews with 30 residents (age range 66–94), and 10 family members from 4 Italian NHs. The interviews were analyzed using content analysis.
Results:
Three main themes were identified: (1) life in the NH, including thoughts about life in a nursing home, residents’ concerns, wishes and fears, and communication barriers; (2) future plans and attitudes toward ACP, including attitudes toward planning for the future and plans already made, and attitudes toward and barriers against ACP; (3) contents and manner of ACP, including contents of ACP discussions, the right moment to introduce ACP, with whom it is better to discuss ACP, and attitudes toward advance directives.
Conclusions:
ACP was a welcome intervention for the majority of participants, but an individualized assessment of the person's readiness to be involved in ACP is needed. For people with dementia, it is essential to identify the right time to introduce ACP before NH admission. Participants in our study suggested that ACP should include palliative care and practical issues, and that in the NH setting all staff and family members may have a valuable role in ACP.
From a communication perspective, the term “do not resuscitate” (DNR) is challenging to use in end-of-life discussions because it omits the goals of care. An alternative, “Allow Natural Death” (AND), has been proposed as a better way of framing this palliative care discussion.
Case:
We present a case where a nurse unsuccessfully discusses end-of-life goals of care using the term DNR. Subsequently, with the aid of a communication trainer, he is coached to successfully use the term “AND” to facilitate this discussion and advance his goal of palliative care communication and planning.
Discussion:
We contrast the advantages and disadvantages of the term AND from the communication training perspective and suggest that AND-framing language replace DNR as a better way to facilitate meaningful end-of-life communication. One well-designed, randomized, controlled simulation study supports this practice. We also consider the communication implications of “natural” versus “unnatural” death.
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