Principles of care for seriously ill patients in palliative office

ObjectiveTo describe the strategies used by a collection of healthcare systems to apply different methods of identifying seriously ill patients for a targeted palliative care intervention to improve communication around goals and values.MethodsWe present an implementation case series describing the experiences, challenges and best practices in applying patient selection strategies across multiple healthcare systems implementing the Serious Illness Care Program (SICP).ResultsFive sites across the USA and England described their individual experiences implementing patient selection as part of the SICP. They employed a combination of clinician screens (such as the ‘Surprise Question’), disease-specific criteria, existing registries or algorithms as a starting point. Notably, each describes adaptation and evolution of their patient selection methodology over time, with several sites moving towards using more advanced machine learning–based analytical approaches.ConclusionsInvolving clinical and programme staff to choose a simple initial method for patient identification is the ideal starting place for selecting patients for palliative care interventions. However, improving and refining methods over time is important and we need ongoing research into better patient selection methodologies that move beyond mortality prediction and instead focus on identifying seriously ill patients—those with poor quality of life, worsening functional status and medical care that is negatively impacting their families.

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Final Thoughts (DRAFT)

10.1093/med/9780199313945.003.0019 ◽

2018 ◽

Author(s):

Robert C. Macauley

Keyword(s):

Palliative Care ◽

Moral Distress ◽

Ethical Dilemmas ◽

Economic Resources ◽

Emotional Challenges ◽

Seriously Ill Patients ◽

External Forces ◽

The Right ◽

Developed World ◽

Seriously Ill

It is not enough to know how to respond to ethical dilemmas in palliative care. Sufficient resources are required to implement the nuanced approach to ethical dilemmas presented in this textbook. In the developed world, there exists a profound shortage of palliative care clinicians, as well as regulatory barriers which may impede the provision of optimal palliative care. The situation is far more serious in the developing world, where access to symptomatic medications may be severely restricted due to lack of economic resources or bureaucratic barriers. Even when a qualified team is available and necessary tools are at hand, the emotional challenges inherent in caring for seriously ill patients may negatively impact team dynamics. This is particularly true in situations where members of the team believe they know what the “right” thing to do is, but external forces prevent them from doing it, thus causing moral distress.

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Perception of Benefits and Harms of Medical Cannabis among Seriously Ill Patients in an Outpatient Palliative Care Practice

Journal of Palliative Medicine ◽

10.1089/jpm.2019.0211 ◽

2020 ◽

Vol 23 (4) ◽

pp. 558-562 ◽

Cited By ~ 1

Author(s):

Ali John Zarrabi ◽

Justine W. Welsh ◽

Roman Sniecinski ◽

Kimberly Curseen ◽

Theresa Gillespie ◽

...

Keyword(s):

Palliative Care ◽

Care Practice ◽

Medical Cannabis ◽

Seriously Ill Patients ◽

Seriously Ill

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Providing Palliative Care to Seriously Ill Patients With Nonhealing Wounds

Journal of Wound Ostomy and Continence Nursing ◽

10.1097/won.0b013e3181d8c9f7 ◽

2010 ◽

Vol 37 (3) ◽

pp. 277-282 ◽

Cited By ~ 7

Author(s):

MariJo Letizia ◽

Jonathan Uebelhor ◽

Elizabeth Paddack

Keyword(s):

Palliative Care ◽

Seriously Ill Patients ◽

Seriously Ill

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“There were more decisions and more options than just yes or no”: Evaluating a decision aid for advanced cancer patients and their family caregivers

Palliative & Supportive Care ◽

10.1017/s1478951516000596 ◽

2016 ◽

Vol 15 (1) ◽

pp. 44-56 ◽

Cited By ~ 8

Author(s):

Marie Bakitas ◽

J. Nicholas Dionne-Odom ◽

Lisa Jackson ◽

Jennifer Frost ◽

Margaret F. Bishop ◽

...

Keyword(s):

Decision Making ◽

Palliative Care ◽

Advance Care Planning ◽

Decision Aid ◽

Care Planning ◽

Serious Illness ◽

Early Palliative Care ◽

Advance Care ◽

Seriously Ill Patients ◽

Seriously Ill

AbstractObjective:Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial.Method:Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD).Results:Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews “validating.” The key themes were: (1) “the earlier the better” to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning.Significance of results:The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.

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Potential Perils to the Promise of Specialty Palliative Care

10.1093/oxfordhb/9780199974412.013.33 ◽

2016 ◽

Author(s):

Robert M. Arnold

Keyword(s):

Health Care ◽

Palliative Care ◽

Health Care System ◽

Specialist Palliative Care ◽

The Past ◽

Seriously Ill Patients ◽

Seriously Ill ◽

Generalist Palliative Care ◽

Care System

Despite the growth of specialty palliative care over the past twenty years, the experience of most seriously ill patients in America has not changed. Although some have argued that the solution to this problem is to increase specialist palliative care (SPC), the author argues that this is a mistake. The growth of SPC may distract attention from solutions that are more likely to improve care for most seriously ill patients. SPC may decrease the quality and quantity of palliative care provided by nonspecialists by allowing the health care system to continue to deny death and “ghetto-izing” and deskilling generalist palliative care. This chapter presents these two arguments and tries to determine what changes are required to ensure that all seriously ill patients receive good palliative care, regardless of who provides the care.

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Hospital-Based Chaplain Activities with Seriously Ill Patients and Adherence to Clinical Practice Guidelines for Spiritual Care in Palliative Care (SA537-B)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2014.11.170 ◽

2015 ◽

Vol 49 (2) ◽

pp. 400-401

Author(s):

Zachary Binney ◽

Tammie Quest ◽

Molly Perkins ◽

George Grant ◽

Ellen Idler

Keyword(s):

Palliative Care ◽

Clinical Practice ◽

Clinical Practice Guidelines ◽

Practice Guidelines ◽

Spiritual Care ◽

Seriously Ill Patients ◽

Seriously Ill

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A simplified screening tool to identify seriously ill patients in the Emergency Department for referral to a palliative care team

Minerva Anestesiologica ◽

10.23736/s0375-9393.16.11703-1 ◽

2017 ◽

Vol 83 (5) ◽

Author(s):

Paolo Cotogni ◽

Anna De Luca ◽

Andrea Evangelista ◽

Claudia Filippini ◽

Renata Gili ◽

...

Keyword(s):

Emergency Department ◽

Palliative Care ◽

Screening Tool ◽

Palliative Care Team ◽

Care Team ◽

Seriously Ill Patients ◽

Seriously Ill

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Clinical interventions, economic impact, and palliative care

Oxford Textbook of Palliative Nursing ◽

10.1093/med/9780199332342.003.0070 ◽

2015 ◽

pp. 1048-1055

Author(s):

Patrick J. Coyne ◽

Thomas J. Smith ◽

Laurel J. Lyckholm

Keyword(s):

Palliative Care ◽

Hospice Care ◽

Management Strategies ◽

Cost Savings ◽

Palliative Care Teams ◽

Futile Care ◽

Seriously Ill Patients ◽

Care Costs ◽

Seriously Ill

Economic outcomes are increasingly important for all types of healthcare, including palliative care. There are substantial opportunities for improvement by using disease management strategies and care pathways. Directed, ethically motivated interventions about futile care appear to produce significant cost savings. The use of advance directives or hospice care may be good medical care, but have not been shown to produce major economic benefit. Integrated palliative care teams have been shown to reduce hospital and end-of-life care costs for seriously ill patients. For treatment to be justified, there must be some demonstrable improvement in disease-free or overall survival, toxicity, quality of life, or cost effectiveness.

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