Exploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study

doi:10.1016/j.iccn.2015.12.004

Intensive and Critical Care Nursing

Volume 33, April 2016, Pages 56-64

https://doi.org/10.1016/j.iccn.2015.12.004 Get rights and content

Summary

Objectives

The aim of this study was to examine the experience(s) of family with the nursing aspects of End-of-life care in the intensive care unit after a decision to end life-sustaining treatment, and to describe what nursing care was most appreciated and what was lacking.

Method

A phenomenological approach including inductive thematic analysis was used. Twenty-six family members of deceased critically ill-patients were interviewed within two months after the patient's death about their experiences with nursing aspects of end-of-life care in the intensive care unit.

Findings

Most family members experienced nursing contribution to end-of-life care of the patient and themselves, especially supportive care. Families mentioned the following topics: Communication between intensive care nurses, critically ill patients and family; Nursing care for critically ill patients; Nursing care for families of critically ill patients; Pre-conditions. Families appreciated that intensive care nurses were available at any time and willing to answer questions. But care was lacking because families had for example, a sense of responsibility for obtaining information, they had problems to understand their role in the decision-making process, and were not invited by nurses to participate in the care.

Conclusions

Most family appreciated the nursing EOLC they received, specifically the nursing care given to the patient and themselves. Some topics needed more attention, like information and support for the family.

Introduction

In the Netherlands, nearly 8% of all intensive care unit (ICU) patients die in the ICU (NICE, 2015). Because of the use of life-sustaining measures, approximately 85% of the deaths of ICU patients occur after withdrawal or withholding life-sustaining treatment (Kompanje et al., 2013). Withholding treatment can be defined as a planned medical decision not to order treatments that are otherwise warranted, whereas withdrawal of treatment means the discontinuation of life-sustaining treatment (Latour et al., 2009, Quenot et al., 2012, Valentin et al., 2008).

Because of the increasing number of critically ill patients, the number of decisions to withdraw or withhold life-sustaining treatment is expected to increase as well (Halcomb et al., 2004, Kompanje et al., 2013).

In the Netherlands three levels of ICUs exist. In Table 1 the differences between the levels of the ICUs are presented.

End-of-life care (EOLC) is defined as the care and supportive services that a serious ill patient and his family receive following the decision to end treatment(s) (Latour et al., 2009). Domains of quality of EOLC in the ICU are described including: (1) patient and family centered decision making, (2) communication with patients and family, (3) continuity of care, (4) emotional and practical support for patients and family, (5) symptom management and comfort care, (6) spiritual support and (7) emotional and organisational support for ICU professionals (Curtis and Engelberg, 2006).

During EOLC, not only ICU patients need nursing care, but also their family, including relatives and friends, need care and support. In the Netherlands, family members act as the legal representative of a patient who is unconscious or sedated. This means that the family have to be informed about the treatment and should represent the values and preferences of the patient. Family often discuss their ideas and thoughts about withdrawing treatment with the attending nurses. However, the decision for treatment is made by the physician and family do not decide on treatment for the patient. However physicians strive for agreement on treatment decisions with the family (Gerritsen et al., 2009).

Nursing care is, among other things aimed at emotional and spiritual support for patient and family, because an ICU stay of a (beloved) person can cause anxiety, depression and even posttraumatic stress disorder (Davidson et al., 2012, Kirchhoff et al., 2004).

Family of ICU patients experienced the relationship with ICU nurses during the end-of-life (EOL) decision-making process as adequate regarding compassion and comfort, but they deemed the communication as vague and evasive (Lind et al., 2012). Besides, nurses did not always participate in family meetings thus family missed the support of nurses. These findings are in line with the results of Lloyd-Williams et al. (2009). In this study, family appreciated the physical care for the patients, but communication and delivery of bad news were a cause for concern. Also, the facilities in the ICU, such as lack of family rooms, little privacy at the patients’ bedside or during farewell and lack of follow up meetings were mentioned.

Follow up meetings, support groups and family meetings with an attending nurse for family of deceased ICU patients are recommended as a way for professionals to communicate with family (Davidson et al., 2012). These authors describe the post-intensive care syndrome family, representing the response of family to EOLC and the death of ICU patients, including anxiety, acute stress disorder, posttraumatic stress, depression and complicated grief. Communication and involving family in care may affect long-term outcomes.

In the Netherlands, the ICU physician communicates with patients and family about treatments and sometimes the physician will ask the family what they think that should be done. However, the physician decides. The physician has to request informed consent of the patient about the treatment. When a patient is unconscious, sedated or incompetent, the legal representative of the patient has to be informed and should represent the values and preferences of the patient in decision-making (Gerritsen et al., 2009, NICE, 2015). The patient, if possible, and family are informed during family meetings. Regularly, the physician discusses issues of care and ending treatment with nurses and other professionals.

Nurses have a role in EOLC of ICU patients and their family. We wondered if family experience nursing EOLC in the ICU and how they judge it. Knowledge of the experiences of family will enable ICU nurses to adapt their care to the needs and wants of family of dying ICU patients in the Netherlands.

Section snippets

Aim and research question

The primary aim of this study was to examine the experience(s) of the family with nursing EOLC in ICUs after a decision to end life-sustaining treatment. Secondary aims were to describe what the family appreciated most and what they missed during EOLC in nursing care. The primary research question was ‘What are the experiences of the family with the nursing aspects of End-of-life care in the ICU?’ The secondary research question was ‘What elements of care are appreciated most, and what is

Design

A phenomenological approach was used, including inductive thematic analysis. A phenomenological approach aims to generate a description of a phenomenon of everyday experiences and to achieve an understanding of its essential structure (Holloway and Wheeler, 2002). We studied the experiences of family of the nursing EOLC in the ICU.

We followed the six steps for the inductive thematic analysis as described by Kvale (1996), as shown in Table 2.

Sample and setting

Family were recruited through purposive sampling in

Findings

Most family members had positive experiences with the nursing EOLC the patient had received, although not all the needs and wants of the family were assessed a regular basis. The experiences of family members during nursing EOLC could be arranged in four themes:

1.
Communication between ICU nurses, ICU patients and family.
2.
Nursing care for ICU patients.
3.
Nursing care for family of ICU patients.
4.
Preconditions.

Per theme examples will be given of experiences, and which elements of care were appreciated

Discussion

In this study, the aim was to examine the experiences of families in nursing care during EOL in ICU after a decision to withhold or withdraw life-sustaining treatment. Most family members appreciated the nursing EOLC the patient had received. Four themes of nursing EOLC were identified: communication, care for patients, care for family and preconditions.

The communication between family and nurses was considered good. ICU nurses were available at any time, and willing to answer their questions.

Methodological considerations

The study was strengthened by interviews of family from four different hospitals, five to eight weeks after death of the patient. This probably brought the findings closer to reality than interviews performed longer after death of the patient, as seen in other studies.

Our sample consisted of Dutch families. Because ICU nurses were responsible for asking the families’ permission to be approached by the researcher, it is possible that families who coped better with the death of the patient,

Conclusion

In conclusion, families identified some perceived strengths and omissions of nursing EOLC in the ICU, based on experiences. Four themes were recognised: Communication between ICU nurses, ICU patients and family; Nursing care for ICU patients; Nursing care for family of ICU patients; Preconditions. Family appreciated the provided nursing care during EOLC in the ICU, specifically with the given nursing care to the patient and themselves. Some topics need more attention, like adequate information,

Acknowledgements

We wish to thank all family members for sharing their experiences.

Funding: This work was supported by the Foundation Innovation Alliance, Regional Attention and Action for Knowledge Circulation [2011-13-6P].

Conflict of interest: The authors declare that there is no conflict of interest.

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The nurse-family relationship in the Intensive Care Unit is based on interaction and communication amidst human, physical, regulatory and administrative barriers. Improving the nurse-family relationship contributes to the humanization of Adult Intensive Care Units.

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Original articleExploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study

Summary

Objectives

Method

Findings

Conclusions

Introduction

Section snippets

Aim and research question

Design

Sample and setting

Findings

Discussion

Methodological considerations

Conclusion

Acknowledgements

Intensive Crit Care Nurs

Crit Care Clin

J Pain Symptom Manage

Aust Crit Care

Crit Care Clin

Quality indicators for end-of-life care in the intensive care unit

Crit Care Med

Critical Care Nurses’ perceptions of obstacles, supports, and knowledge needed in providing quality End-of-Life Care

Dimens Crit Care Nurs

Measuring success of interventions to improve the quality of end-of-life care in the intensive care unit

Crit Care Med

Family response to critical illness: postintensive care syndrome-family

Crit Care Med

End-of-life care in intensive care units-family routines and environmental factors

Scand J Caring Sci

Richtlijn ‘Nalaten en staken van behandeling en palliatieve zorg na het staken van behandeling bij volwassen IC patiënten’ [Guideline ‘withholding and withdrawing life sustaining treatment and palliative care after withholding treatment in the adult ICU’]

Original article
Exploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study