A Project to Enhance Clinician Communication with Imminently Dying Patients and their Families Amy M. Sullivan, EdD VCU Department of Social - PowerPoint PPT Presentation

Loading...

PPT – A Project to Enhance Clinician Communication with Imminently Dying Patients and their Families Amy M. Sullivan, EdD VCU Department of Social PowerPoint presentation | free to download - id: 607c4f-MjliZ



Loading


The Adobe Flash plugin is needed to view this content

Get the plugin now

View by Category
About This Presentation
Title:

A Project to Enhance Clinician Communication with Imminently Dying Patients and their Families Amy M. Sullivan, EdD VCU Department of Social

Description:

Harris Manchester College - Oxford University Summer Research Institute 2008 A Project to Enhance Clinician Communication with Imminently Dying Patients and their ... – PowerPoint PPT presentation

Number of Views:101
Avg rating:3.0/5.0
Slides: 35
Provided by: ASull
Learn more at: http://wp.vcu.edu
Category:

less

Write a Comment
User Comments (0)
Transcript and Presenter's Notes

Title: A Project to Enhance Clinician Communication with Imminently Dying Patients and their Families Amy M. Sullivan, EdD VCU Department of Social


1
A Project to Enhance Clinician Communication with
Imminently Dying Patients and their Families Amy
M. Sullivan, EdD VCU Department
of Social Behavioral Health
  • Harris Manchester College - Oxford University
  • Summer Research Institute
  • 2008

2
VCU Office of Research 5th Thursday April 29, 2009
  • Project background and overview
  • Harris Manchester experience
  • Ethics in palliative care research

3
Project Overview
  • Aim To develop the curriculum for intervention
    Enhancing Clinician Communication with Imminently
    Dying Hospitalized Cancer Patients and their
    Families.
  • Work with Dr. Bee Wee and colleagues to learn
    about their approach to inter-professional
    education in palliative care. Dr. Wee is Senior
    Clinical Lecturer in Palliative Medicine,
    Associate Director of Clinical Studies at the
    Oxford University medical school, and author of
    the book Education in Palliative Care Building a
    Culture of Learning (2007).

4
Rationale
  • Approximately 2.4 million adults die each year in
    the U.S.
  • About 40 of deaths occur in the hospital
  • A majority of patients spend at least some time
    in the hospital, on average 13 days, in the six
    months prior to death.
  • The hospital setting is therefore a high-impact
    venue for improving end-of-life (EOL) care.

5
  • Clinician-patient-family communication is a key
    factor in providing quality care to patients near
    the end of life and their families.
  • Aids clinicians in coordinating care
    (Ellershaw and Ward, 2003 Lamont and
    Christakis, 2003)
  • Open awareness associated with greater
    likelihood of dying at home, receiving hospice
    care, and having family members present at death
    (Seale, Addington-Hall, McCarthy,
    1997)
  • Most (though not all) patients and families want
    to be told when death is imminent, and most say
    they benefit from this communication.
  • (Clayton, Butow, Arnold, Tattersall,
    2005 Steinhauser, Christakis, Clipp, et
    al., 2001)

6
  • Some correlates of inadequate communication
  • Late (or no) referral to hospice or palliative
    care,
  • Inadequate discussion of goals for care or
    advance directives,
  • Undertreated pain, unneeded invasive and costly
    medical interventions.
  • Higher incidence of complicated grief among
    caregivers who feel unprepared for their loved
    ones death.

7
  • National studies with physicians and medical
    trainees show high interest/limited EOL training
    (Sullivan, Lakoma, Block 2001)
  • 98 of nurses ranked EOL education as important
    and ranked how to talk to patients and families
    about dying among highest needs (White,
    Coyne, Patel, 2001)
  • Fewer than 50 of patients are told when death
    might be imminent (Sullivan, Lakoma, Matsuyama,
    Rosenblatt, Arnold, Block, 2007)

Evidence of high interest in, and need for,
end-of-life care clinical education
8
Harris Manchester Project
9
  • Develop intervention for R01 study
  • (1) Target individual-level change by teaching
    clinicians skills and practices in communicating
    with dying cancer patients and their families
  • (2) Address team-level change by training
    clinicians to facilitate routine within-team
    discussions, during daily team meetings, about
    EOL communication with seriously ill inpatients
    and
  • (3) Effect hospital unit-level culture change by
    providing training to all clinician stakeholders
    to establish a shared framework, values, and
    skills for communication with patients near the
    end of life

10
Sir Michael Sobell House, Oxford
  • The Sir Michael Sobell House is an adult
    specialist palliative care service for people
    with a life-threatening illness, with 20 beds in
    the Inpatient Unit and 15 places a day in the Day
    Hospice.
  • Patient services are enhanced by a dedicated
    education and research facility. The Study Centre
    supports training for in-house staff, medical
    students, postgraduate medical trainees, and
    senior practitioners working in palliative care
    nationally and internationally. The Sobell House
    is a WHO Collaborating Centre for Palliative
    Care.

11
Dr. Wee Study Centre Staff
12
Activities
  • Meetings with Bee and her staff
  • Attended multidisciplinary team meetings
  • Shadowed clinicians
  • Consulted with research fellows
  • Met with Robert Twycross, MD (worked with Dame
    Cecily Saunders, MD, founder of St. Christophers
    Hospice)

13
Progress to date
  • R01 submitted to NCI and RC1 submitted to NINR,
    with Bee as consultant
  • 2 Pilot studies underway
  • Interviews with family caregivers and clinicians
  • Pilot intervention with residents and nurses

14
(No Transcript)
15
(No Transcript)
16
Ethics in Palliative Care Research

17
Research evidence is needed in all aspects of
end-of-life care
  • Symptom management
  • Communication
  • Ethics and clinical decision-making
  • Caregiver support
  • Context of care delivery
  • Gender and cultural differences

18
  • Patient and family caregiver participation and
    perspectives are essential to obtaining valid and
    meaningful outcomes
  • Quality of life
  • Treatment preferences
  • Pain and symptom management
  • Psychosocial outcomes

19
Does research in end of life or palliative care
require special guidelines?
  • Whereas the end of life does present important
    ethical and moral challenges to researchers and
    should be scrutinized carefully by institutional
    review boards (IRBs), special guidelines are not
    required to promote and ensure the ethical
    conduct of research at lifes end. (Phipps 2002)

20
Are palliative care patients uniquely vulnerable?
  • Vulnerable population
  • Patients and loved ones are often facing a
    challenging, sad, and painful time
  • They may be overwhelmed with emotional, physical,
    and caregiving burdens
  • Patient decision-making capacity may be impaired
  • Patients and/or caregivers may not fully
    understand patient prognosis or life expectancy

21
Phipps (2002) and others suggest that these
issues are no different for patients near the end
of life and their families than for patients who
are experiencing other health crises or serious
medical condition
  • 1. Are the potential research participants
    significantly different from other participants?
  • 2. Do the methods and approaches of recruitment
    and enrollment present significantly different
    risks or burdens to potential participants?
  • 3. Are there significantly increased concerns
    about the content and process of informed
    consent?

22
  • 1. Are the potential research participants
    significantly different from other participants?
  • Similar concerns can be applied to experiences
    of other patient populations e.g., those
    receiving a devastating diagnosis, amputation,
    organ transplant, or severe brain injury
  • Recognizing the impact of health crises and
    medical events on the lives of potential research
    subjects is something that needs to be applied
    across all research with human subjects, not just
    with those in the various trajectories associated
    with the end of life.
  • (Phipps 2002)

23
  • 2. Do the methods and approaches of recruitment
    and enrollment present significantly different
    risks or burdens to potential participants?
  • Need to attend to issues of privacy, sensitive
    information, not improperly disclosing medical
    information that patients/families
  • It is important also to recognize that many
    patients benefit from this research, as well,
    e.g., having someone to talk with about these
    issues, making a contribution to research

24
  • 3. Are there significantly increased concerns
    about the content and process of informed
    consent?
  • Some patients may not be decisionally capable,
    may need surrogates to consent for them.
    Investigators should use the same approaches as
    those used for patients with dementia,
    psychiatric illness, or in ICU settings

25
  • Guidelines from the National Bioethics Advisory
    Committee recommends that cognitive capacity
    should be assessed formally whenever subjects are
    likely to be cognitively impaired and the
    research poses more than minimal risk. When
    research involves only interviews or behavioral
    interventions that pose minimal risks, formal
    capacity assessments should not be required.
    (Casarett Karlawish, 2000)

26
  • Recommendations
  • IRBs will be better able to weigh the risks and
    benefits of research if they include at least one
    HCP or researcher who is familiar with palliative
    care
  • IRB members need to be aware of tendencies to be
    overprotective of patients with life-threatening
    illness.
  • Bottom line Even though concerns about
    vulnerability are legitimate, they do not justify
    special restrictions for palliative care
    research. (Casarett Karlawish, 2000)

27
  • And while it is important to protect patients and
    families from harm, one interviewee noted, some
    doctors have declined to let their patients take
    part in studies without asking the patient even
    though the study has had ethical review
    Generally speaking in terms of cancer treatment
    and palliative care, a lot of patients are quite
    altruistic, they want to be able to make some
    sort of contribution and they shouldnt be
    deprived of that opportunity. (Stevens et al
    2003)

28
What about interviewing bereaved caregivers?
  • Research suggests caregivers can be contacted as
    soon as 8 to 12 weeks after patient death
    (Morrison 2002, Seamark et al. 2000)
  • 75 of caregiver interviewees answered very
    helpful or helpful to the question, Did you
    find the interview helpful? (Seamark et
    al. 2000)

29
  • In our experience, interviewing bereaved
    caregiver often helps caregivers to process
    emotions
  • Note from a recent interviewee
  • Thank you for asking me to participate in your
    study. I sincerely hope that I contributed
    information that was helpful in some way. Our
    conversation was a great help to me as well.

30
  • It is also important to protect clinician
    participants
  • In our research with clinicians, the same
    ethical principles apply as in other studies
    where professional standing and reputation need
    to be protected.
  • E.g. Clinician members of the research staff do
    not have access to identifiable clinician data
    clinicians do not enroll trainees into research
    studies

31
Acknowledgements
Research Team Amy Nichols-Belo Thomas
Smith Patrick Coyne Laurel Lyckholm Tim Ford Kirk
Brown Alan Dow Aaron Anderson Stephanie Call
32
Gratitude
Office of the Vice President for
Research Frank Macrina Ann Nichols-Casebolt Jane
Lalich
33
Discussion and questions
34
Bibliography
  • Casarett, DJ, Karlawish, JHT. 2000. Are special
    ethical guidelines needed for palliative care
    research? Journal of Pain and Symptom Management
    20 130-139.
  • de Raeve, L. 1994. Ethical issues in palliative
    care research. Palliative Medicine 8 298-305.
  • Seamark, DA, Gilbert, J, Lawrence, CJ, and
    Williams, S. 2000. Are postbereavement research
    interviews distressing to carers? Lessons learned
    from palliative care research. Palliative
    Medicine 14 55-56.
  • Stevens, T, Wilde, D, Paz, S, Ahmedzai, SH,
    Rawson, A, and Wragg, D. 2003. Palliative care
    research protocols a special case for ethical
    review. Palliative Medicine 17 482-490.
About PowerShow.com