Using the Family Covenant in Planning End-of-Life Care: Obligations and Promises of Patients, Families, and Physicians

2003 ◽  
Vol 51 (8) ◽  
pp. 1155-1158 ◽  
Author(s):  
David J. Doukas ◽  
John Hardwig
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
The Family

scholarly journals Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Sue Duke ◽  
◽  
Natasha Campling ◽  
Carl R. May ◽  
Susi Lund ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Research Evidence ◽  
Care Transitions ◽  
Family Members ◽  
Life Care ◽  
The Family ◽  
Acute Hospitals ◽  
Pilot Implementation ◽  
Context Specific

Abstract Background Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. Methods The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n = 22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n = 3), and in-depth evaluation meetings (n = 2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. Results Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members’ involvement in discharge decisions and end-of-life care planning. Conclusion The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study. Trial registration n/a.

Family communication and decision making at the end of life: A literature review

2014 ◽  
Vol 13 (3) ◽  
pp. 815-825 ◽  
Author(s):  
Cara L. Wallace
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Communication ◽  
End Of Life Care ◽  
Family Members ◽  
Empirical Literature ◽  
Future Research ◽  
Life Care ◽  
The Family

AbstractObjective:Patients and families coping with a terminal illness are faced with a number of decisions over the course of their disease. The role that family communication plays in the process of decision making is an important one. The objectives for this review are to examine the current state of empirical literature on the relationship between family communication and decision making about end-of-life care, to identify gaps, and to discuss implications for policy, practice, and future research.Method:Articles were identified using systematic keyword searches within the following relevant databases: Academic Search Complete, CINAHL Plus, Communications and Mass Media Complete, ERIC, PsychINFO, MEDLINE, SocINDEX, and ProQuest.Results:The three bodies of relevant literature that emerged during this review include: (1) the importance of family communication at the end of life (EoL); (2) family decision making at the EoL; and (3) the interrelationship of communication (both within the family and with healthcare professionals) and decision making at the EoL. While the literature highlights the role of communication between medical professionals and the patient or family members, there is very little focus on the process of how family communication among the family members themselves contributes to decision making at the end of life.Significance of results:Barriers to end-of-life care are important considerations for helping patients to access timely and appropriate services. Understanding the pertinent role of family communication as it relates to the decision for EoL care is the first step in working to provide another avenue for overcoming these barriers.

Palliative and end-of-life care in the ICU

2020 ◽  
pp. 3914-3917
Author(s):  
Phillip D. Levin ◽  
Charles L. Sprung
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
End Of Life Care ◽  
Organ Support ◽  
Life Care ◽  
Peace Of Mind ◽  
Bedside Manner ◽  
The Family ◽  
Prolongation Of Life

What happens when organ support leads to prolongation of life, but with no hope of ultimate survival, or survival with unacceptable quality of life? For many—but not all—patients, families, and physicians, prolongation of life with little or no hope of a good quality of life is considered worse than death. This chapter looks at the cultural milieu in determining the responses and needs of all parties in regard to end-of-life care. Excellent communication is required to prevent potential conflicts and provide both the medical team and the patient/family with peace of mind. The decision to institute palliative or end-of-life care should, if at all possible, always be reached via a negotiating process between the medical staff and the patient or their family. The best protection against conflict comes from a good bedside manner reflecting patience with the family, honesty, and some optimism.

The Dying Neonate: Family-Centered End-of-Life Care

2009 ◽  
Vol 28 (2) ◽  
pp. 75-83 ◽  
Author(s):  
Martine De Lisle-Porter ◽  
Ann Marie Podruchny
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Evidence Based ◽  
Life Care ◽  
New Mothers ◽  
Mothers And Fathers ◽  
Intravenous Access ◽  
Care Guideline ◽  
The Family ◽  
Family Centered

There is a need in the NICU for an end-of-life care guideline that nurses can follow when working with dying infants and their families. Maintaining intravenous access to relieve the infant’s pain, communicating sensitively to the family, and creating precious, everlasting memories are goals that should be part of every dying infant’s care. The nurse’s ability to partner with the family in caring for the infant is integral to helping the family take the first steps in their grief journey. Evidence-based literature provides NICU nurses with the knowledge that they are the facilitators of end-of-life care for dying infants. New mothers and fathers are not aware of the caring parental tasks they can perform for their dying baby. They look to and depend on their infant’s nurses to encourage them. The guideline included here provides nurses with a tool for ensuring that families have the opportunity to create memories that will not only help them with their immediate pain, but also comfort them for a lifetime.

scholarly journals Smartphone-Enabled, Telehealth-Based Family Conferences in Palliative Care During the COVID-19 Pandemic: Pilot Observational Study (Preprint)

2020 ◽  
Author(s):  
Yu-Rui Wu ◽  
Tzu-Jung Chou ◽  
Yi-Jen Wang ◽  
Jaw-Shiun Tsai ◽  
Shao-Yi Cheng ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Discharge Planning ◽  
Control Measures ◽  
Treatment Center ◽  
Life Care ◽  
Palliative Care Setting ◽  
The Family ◽  
Care Family

BACKGROUND In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important. OBJECTIVE We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach. METHODS Family conferences comprised three phases designed according to telehealth implementation guidelines—the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: “team talk,” “option talk,” and “decision talk.” The model has been implemented at a national cancer treatment center in Taiwan since February 2020. RESULTS From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients’ mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as <i>good</i> or <i>very good</i> (36%), whereas 9 were <i>neutral</i> (64%). CONCLUSIONS Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.

scholarly journals Co-construction of the Family-Focused Support Conversation: A Participatory Learning and Action Research Study to implement support for family members whose relatives are being discharged for end of life care at home or in a nursing home

2020 ◽  
Author(s):  
Susan Duke ◽  
Natasha Campling ◽  
Carl May ◽  
Susi Lund ◽  
Neil Lunt ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Research Evidence ◽  
Care Transitions ◽  
Family Members ◽  
Life Care ◽  
The Family ◽  
Acute Hospitals ◽  
Pilot Implementation ◽  
Context Specific

Abstract Background Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psycho-social support for family members providing end of life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. Methods The aim of the study was to implement research evidence for family support at the end of life into acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated by data comprised of reflective records of intervention delivery (n=22), in-depth records of telephone implementation support meetings, between research team members and co-researchers (n=3) and in-depth evaluation meetings (n=2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. Results Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The key disruption to practice was a change in interactional practice, from being patient-focused, providing information about patient needs, to family-focused, identifying family concerns and facilitating family-focused solutions. Co-researchers reported an increase in family members’ involvement in discharge decisions and end of life care planning. Conclusion The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end of life care transitions. This informed a larger scale implementation study, reported in a respective paper.

scholarly journals Practice Recommendations for End-of-Life Care in the Intensive Care Unit

2020 ◽  
Vol 40 (3) ◽  
pp. 14-22 ◽  
Author(s):  
Hanne Irene Jensen ◽  
Kristin Halvorsen ◽  
Heidi Jerpseth ◽  
Isabell Fridh ◽  
Ranveig Lind
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Life Care ◽  
Family Needs ◽  
High Quality ◽  
Number Of Patients ◽  
The Family

Topic A substantial number of patients die in the intensive care unit, so high-quality end-of-life care is an important part of intensive care unit work. However, end-of-life care varies because of lack of knowledge of best practices. Clinical Relevance Research shows that high-quality end-of-life care is possible in an intensive care unit. This article encourages nurses to be imaginative and take an individual approach to provide the best possible end-of-life care for patients and their family members. Purpose of Paper To provide recommendations for high-quality end-of-life care for patients and family members. Content Covered This article touches on the following domains: end-of-life decision-making, place to die, patient comfort, family presence in the intensive care unit, visiting children, family needs, preparing the family, staff presence, when the patient dies, after-death care of the family, and caring for staff.

The family conference as a focus to improve communication about end-of-life care in the intensive care unit: Opportunities for improvement

2001 ◽  
Vol 29 (Supplement) ◽  
pp. N26-N33 ◽  
Author(s):  
J. Randall Curtis ◽  
Donald L. Patrick ◽  
Sarah E. Shannon ◽  
Patsy D. Treece ◽  
Ruth A. Engelberg ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Conference ◽  
The Family

Controlled Donation After Circulatory Determination of Death

2016 ◽  
Vol 32 (3) ◽  
pp. 179-186 ◽  
Author(s):  
Anne L. Dalle Ave ◽  
David M. Shaw
Keyword(s):  
Informed Consent ◽  
End Of Life ◽  
Conflict Of Interest ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Conflicts Of Interest ◽  
Life Care ◽  
Determination Of Death ◽  
The Family

Controlled donation after circulatory determination of death (cDCDD) concerns donation after withdrawal of life-sustaining therapy (W-LST). We examine the ethical issues raised by W-LST in the cDCDD context in the light of a review of cDCDD protocols and the ethical literature. Our analysis confirms that W-LST procedures vary considerably among cDCDD centers and that despite existing recommendations, the conflict of interest in the W-LST decision and process might be difficult to avoid, the process of W-LST might interfere with usual end-of-life care, and there is a risk of hastening death. In order to ensure that the practice of W-LST meets already well-established ethical recommendations, we suggest that W-LST should be managed in the ICU by an ICU physician who has been part of the W-LST decision. Recommending extubation for W-LST, when this is not necessarily the preferred procedure, is inconsistent with the recommendation to follow usual W-LST protocol. As the risk of conflicts of interest in the decision of W-LST and in the process of W-LST exists, this should be acknowledged and disclosed. Finally, when cDCDD programs interfere with W-LST and end-of-life care, this should be transparently disclosed to the family, and specific informed consent is necessary.

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