Best Practices, Enduring Challenges, and Opportunities for VSED

2021 ◽  
pp. 126-130
Author(s):  
Timothy E. Quill ◽  
Paul T. Menzel ◽  
Thaddeus M. Pope ◽  
Judith K. Schwarz
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Best Practices ◽  
Advance Directives ◽  
Symptom Management ◽  
Early Phase ◽  
Terminal Illness ◽  
Care Providers ◽  
Decision Making Capacity ◽  
Challenges And Opportunities

VSED begins with excellent symptom management supported by experienced clinicians. VSED is largely patient controlled, but involvement of experienced palliative care providers and family is strongly recommended. Decision making capacity is frequently lost late in the process as death nears, so written advance directives to continue withholding food and fluids should be completed prior to initiating VSED to forestall any misunderstandings of the patient’s wishes. Challenges associated with VSED include its two week duration before death, the personal determination required, and the possibility of delirium in the latter stages that potentially compromises the commitment to forgo fluids. These challenges should be anticipated and planned for. The primary advantages of VSED include: 1) predictable two week duration from initiation to death; 2) alertness for the early phase, 3) no terminal illness requirement, 4) largely under the patient’s control, and 5) awareness of the possibility of VSED can provide comfort to those worried about unacceptable future suffering.

Illustrative Cases

2021 ◽  
pp. 133-150
Keyword(s):  
Decision Making ◽  
Advance Directives ◽  
Decision Makers ◽  
Decision Making Capacity ◽  
Challenges And Opportunities ◽  
Surrogate Decision Makers ◽  
Food And Drink ◽  
Surrogate Decision ◽  
Real Patients

Four stories of real patients considering VSED who would prefer to continue living until decision-making capacity is lost, and then have others start the stopping eating and drinking (SED) process on their behalf are described. Waiting until this stage potentially protects patients from having to initiate VSED before they really want to, but it also places considerable burdens on surrogate decision-makers who must activate the SED process based on the patient’s prior statements and formal advance directives (ADs). ADs for SED can help guide the timing, but a now-incapacitated patient who is very hungry and thirsty may not comprehend why he is not being provided food and drink. Patients and surrogates should consider in advance how to weigh statements of the “then-self” versus the “now-self” in subsequent decision-making. Four cases of SED by AD are explored, including some of the challenges and opportunities raised by allowing this possibility.

Best Practices, Enduring Challenges, and Opportunities for SED by AD

2021 ◽  
pp. 241-248
Author(s):  
Timothy E. Quill ◽  
Paul T. Menzel ◽  
Thaddeus M. Pope ◽  
Judith K. Schwarz
Keyword(s):  
Decision Making ◽  
Best Practices ◽  
Advance Directive ◽  
Family Members ◽  
Decision Making Capacity ◽  
Challenges And Opportunities

SED by AD begins with an advance directive specifying what eating and drinking limitations the person desires if decision-making capacity is lost and when to begin them. Both written and video instructions are recommended. SED by AD potentially prevents a preemptive choice to VSED by those still enjoying life but wanting to avoid a prolonged dementia death. Challenges to implementation include uncertainty about legality, and concerns about a patient’s possible ‘change of mind’ once capacity is lost. Family members and caregivers may become distressed about how to respond to subsequent requests for food or fluid. Should caregivers respond to the ‘then’ capacitated person who previously completed the directive or the ‘now’ incapacitated person who seems to want oral feedings? Ideally an AD for SED also articulates how caregivers should respond to apparent desires for fluids. Comfort feeding only (CFO) should be the ‘back up’ plan if SED by AD proves to be too difficult for the patient or caregivers.

Advance Directives, Do Not Resuscitate Orders, and Power of Attorney for Health Care

2018 ◽  
Author(s):  
Laura Stafman ◽  
Sushanth Reddy
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Advance Directives ◽  
Advance Directive ◽  
Persistent Vegetative State ◽  
Living Will ◽  
Do Not Resuscitate ◽  
Power Of Attorney ◽  
Decision Making Capacity ◽  
Do Not Resuscitate Orders

In 2005, Terri Schiavo collapsed at home and was found by her husband without respirations or a pulse. She was resuscitated, but suffered severe anoxic brain injury and after 21/2 months was diagnosed as being in a persistent vegetative state. A court appointed her husband as her legal guardian as she did not have a written advance directive and had not specified a power of attorney for health care (POAHC), but heated court battles raged between her husband and her parents regarding who should be making decisions and what the appropriate decisions were. This case highlights the importance of writing down instructions for end-of-life care or designating someone to make decisions in their best interest in the event they could not make these decisions themselves. This review covers advance directives, do-not-resuscitate orders, and POAHC. Figures show an extended values history form, an example of a living will, the California’s Physician Orders for Life-Sustaining Treatment form, components of the CURVES mnemonic to assess decision-making capacity in critical/emergency situations, and activation and deactivation of power of attorney for health care. Tables list the most common types of advance directive and description of each, barriers to the use of advance directives, common themes in surgeons’ attitudes regarding advance directives, general requirements and exclusions for POAHC, and requirements for decision-making capacity in patients. This review contains 5 highly rendered figures, 5 tables, and 56 references

Clinical Issues

2021 ◽  
pp. 151-175
Author(s):  
Timothy E. Quill ◽  
Judith K. Schwarz
Keyword(s):  
Decision Making ◽  
Advance Directives ◽  
Oral Intake ◽  
Decisional Capacity ◽  
Clinical Issues ◽  
Decision Making Capacity ◽  
Seriously Ill

All seriously ill persons should complete advance directives specifying indications for limiting future provision of food and fluids. AD’s for SED specify When oral intake is to be limited and What limitations are to be imposed. Two categories include: (1) withholding all assisted oral intake from a person who has lost decision-making capacity, and previously indicated her wish to not receive any assisted feeding, and (2) Comfort Feeding Only (CFO) which involves providing as much or as little food and fluid as the patient seems to desire. CFO has three subcategories: (a) “Self-feeding only”—limiting oral intake to what the patient is able to self-administer. (b) Both “self-feeding” and “caregiver assisted-feeding” in whatever amount the patient enjoys. (c) “Minimum Comfort Feeding Only” is a modification for those who had expressed a desire to SED but lost decisional capacity before implementation, but now seem to desire food or fluid.

The Family Conference

2019 ◽  
pp. 238-249
Author(s):  
Melissa Red Hoffman
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Surgical Procedure ◽  
Shared Decision ◽  
Treatment Team ◽  
Care Providers ◽  
Time Saving ◽  
Family Conference ◽  
Short Period ◽  
The Family

The family conference chapter explores, in detail, one of the primary interventions performed by palliative care providers. A successful meeting can actually be viewed as time saving as it offers an opportunity for many issues to be reviewed and for multiple important decisions to be made in a relatively short period of time. By describing the conference in terms of a surgical procedure, during which we prepare, do, and close, this chapter offers specific guidance in a way most likely to resonate with a surgeon. It reviews the steps necessary to prepare for a family conference and describes how such steps may aid the family and the treatment team in managing uncertainty. It introduces the ask-tell-ask model of communication and discusses how this model can help to facilitate shared decision-making.

scholarly journals The ABCs of Renal Palliative Care: Tools for Decision-Making and Symptom Management in Kidney Disease (TH312)

2013 ◽  
Vol 45 (2) ◽  
pp. 339-340
Author(s):  
Jane Schell ◽  
Robert Arnold ◽  
Steven Weisbord ◽  
Alvin (Woody) Moss
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Kidney Disease ◽  
Symptom Management

The pyramid of treatment levels: A tool to convey goal-based treatment options.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 147-147
Author(s):  
Heather Leeper ◽  
Andrew Kamell
Keyword(s):  
Decision Making ◽  
Medical Care ◽  
End Of Life ◽  
Symptom Management ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Goals Of Care ◽  
Code Status ◽  
Wide Range

147 Background: 60% of Americans die in acute care hospitals and under 40% of advanced cancer patients have end-of-life care discussions with their health care providers. Didactic methods and tools to teach about symptom management, navigation of treatment decisions, code status, and end-of-life care decisions within an inpatient setting are a necessity to meet this high demand. Methods: A model of medical care systematically dividing clinical management decisions into escalating levels of medical care relative to illness severity, treatment goals, and code status was created. The model is illustrated as a pyramid with a base of symptom management as the initial level of medical care. The second level represents disease-focused medical care including antibiotics, disease-modifying drugs, and chemotherapy administration. Hospitalization with increasingly complex and invasive interventions represents the third level followed by critical illness care including ICU admission and vasopressors as the fourth level. Intubation comprises the fifth level and CPR forms the top of the pyramid. Results: This model has been used extensively at our institution in educating medical students, residents, fellows, and faculty. All groups reported it was helpful in understanding POLST forms, code status, and collaboratively developing appropriate goal-based care plans with their patients. Symptom management remaining as a non-negotiable foundation of care emphasizes its importance. This depiction of medical care may facilitate goals of care and code status discussions and is particularly helpful for determining appropriate care goals or options when considering de-escalation of medical therapies. Used implicitly or explicitly in patient and family discussions, it has facilitated decision-making and discerning the appropriateness of the overall treatment plan relative to patient goals of care. Conclusions: This model of care with its companion pyramid accommodate a wide range of clinical scenarios, is an effective, high yield didactic device for patients, families, and healthcare providers alike, and has applications as supportive tool to optimize goal-based clinical decision making in the context of serious illness.

Patient Involvement in Decisions to Limit Treatment: The Crucial Role of Agreement Between Physician and Patient

2009 ◽  
Vol 27 (13) ◽  
pp. 2225-2230 ◽  
Author(s):  
Eva C. Winkler ◽  
Stella Reiter-Theil ◽  
Dorothee Lange-Rieß ◽  
Nina Schmahl-Menges ◽  
Wolfgang Hiddemann
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Patient Involvement ◽  
Medical Condition ◽  
Treatment Goals ◽  
Incurable Cancer ◽  
Comfort Care ◽  
Decision Making Capacity ◽  
Treatment Limitation ◽  
Diagnosis Therapy

Purpose The aim of this study was to describe, first, the decision-making process concerning the limitation of life-prolonging treatment (DLT); second, the extent to which patients are actually involved in these decisions; and third, to detect medical and ethical factors that affect patient involvement. Patients and Methods This prospective qualitative study enrolled 76 patients with incurable cancer with whom the limitation of life-prolonging treatment was discussed. Embedded researchers on the wards recorded the patient's history, medical condition, type of treatment limitation discussed, patient wishes, decision-making capacity, and patient involvement using an in-depth documentation procedure. Results While the majority of patients were informed about their diagnosis, therapy, and course of disease (99%, 97%, 90%, respectively), only 47% were involved in DLT. Two thirds of the patients preferred palliative care, and one third wished to extend their lifetime. If patients preferred palliative care, they were more often in line with physicians' treatment goals than patients who were striving for longer survival (91.4% v 46.7%; P = .001). They also were involved significantly more often in DLT. Multivariate analysis showed that age, Karnofsky performance index or decision-making capacity had no impact on patient involvement. Conclusion Only half of the patients were involved in DLT. Surprisingly, the main predictor of patient involvement was not their medical condition, but agreement with physicians' palliative treatment goals. These results show that if physicians switch to comfort care in terminally ill patients and patients are not yet prepared to follow this line, treatment limitations are often decided without involving the patient.

scholarly journals An examination of the research priorities for a hospice service in New Zealand: A Delphi study

2015 ◽  
Vol 14 (3) ◽  
pp. 232-240 ◽  
Author(s):  
Kay de Vries ◽  
Jo Walton ◽  
Katherine Nelson ◽  
Rhondda Knox
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
New Zealand ◽  
Symptom Management ◽  
Care Service ◽  
Research Priorities ◽  
Palliative Care Service ◽  
Family Carers ◽  
Research Topics ◽  
Research Themes

AbstractObjectives:Palliative care research is relatively diverse and prioritizing research in this field is dependent on multiple factors such as complex ethical decisions in designing and conducting the research; access to participants who may be deemed “vulnerable” and an increasingly medically focused approach to care. The aim of this study was to inform organizational decision-making and policy development regarding future research priorities for a hospice service in New Zealand.Methods:A modified three-round Delphi technique was employed. Participants were drawn from one dedicated specialist palliative care service that delivers care in the community, day-care, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n = 10, 18, 9, for rounds 1–3, respectively) volunteers (n = 10, 12, 11); and patients and family carers (n = 6, 8, for rounds 1 and 2). Patients and family carers were not involved in the third round.Results:At final ranking of six research themes encompassing 23 research topics were identified by staff and volunteers. These were: symptom management; aged care; education; community; patient and family; and bereavement support and young people. Patients and family carers agreed on four themes, made up of 10 research topics. These were: decision-making, bereavement and loss, symptom management; and recognition of need and response of service.Significance of results:The study generated a rich set of research themes and specific research topics. The perspectives of staff and volunteers are significantly different from those of patients and family members, in spite of the recognition by all concerned that palliative care services work within a philosophy of patient-centered care. Open discussion of ideas has the potential to engage both staff and patients and carers in quality improvement initiatives, and to reinforce the value of research for patient care.

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