Caring for Patients as They Die

1
CARING THROUGH THE END Palliative Care Along
the Continuum of CKD
Completing the Continuum of Care in Chronic
Kidney Disease
Ira R. Byock, MD Director of Palliative
Care Dartmouth-Hitchcock Medical Center
2
Unfinished Business Rx for Health-care
Crisis America's health-care system is broken.
Consider 44 million people, 8.5 million of them
children, don't have health insurance - and their
ranks keep climbing as health-care costs soar.
Patchwork fixes are just that. Our fractured
system needs a systemic overhaul if it is to
provide health care to every American, as it
should, and do so efficiently.
Editorial The Miami Herald May 14, 2004
3
Institute of Medicine Dimensions and
Deficiencies
I. Too many people suffer needlessly at the end
of life, both from errors of omission and from
errors in commission II. Legal, organizational,
and economic obstacles conspire to obstruct
reliably excellent care at the end of life.
Approaching Death Natl Academy Press, 1997
4
Institute of Medicine Dimensions and
Deficiencies
III. The education and training of physicians
and other health care professionals fail to
provide them the attitudes, knowledge, and
skills required to care well for the dying
patient. IV. Current knowledge and understanding
are insufficient to guide and support the
consistent practice of evidence-based
medicine at the end of life.
Approaching Death Natl Academy Press, 1997
5
Reasonable expectations

• Routine assessment and competent treatment of
  pain physical distress
• Clear, complete honest communication
• Respect for peoples stated preferences
• Coordination of care
• Crisis prevention and management
• Safe prudent staffing ratios for nurses and
  CNAs
• Support for family caregivers
• Support for family in grief

6
Cultural Denial

• Cardiopulmonary Resuscitation
• 70 wanted CPR
• 77 had not discussed CPR with their MDs
• 58 declined interested in the discussion

Jan Hofmann et.al., Patient Preferences for
Communication with Physicians about End-of-Life
Decisions, Annals of Internal Medicine Vol.127,
No.1, p1-11, July 1997
7
Cultural Denial

• Mechanical Ventilation
• 88 did not want prolonged mechanical
  ventilation
• 88 had not discussed preference with their MD
• 80 did not want to have the discussion

Jan Hofmann et.al., Patient Preferences for
Communication with Physicians about End-of-Life
Decisions, Annals of Internal Medicine Vol.127,
No.1, p1-11, July 1997
8
Core Values and Ethical Principles of Medicine
1. Preservation of Life 4. Autonomy 2.
Alleviation of Suffering 5. Distributive
Justice 3. Non-maleficence 6. Truth Telling
("primum non nocere") 7. Integrity of the
Profession
9
In Search of the Good Death
? Pain and symptom management ? Clear decision
making ? Preparation for death ? Completion ?
Contributing to others ? Affirmation of the
whole person
Steinhauser KE Clipp EC McNeilly M Christakis
NA McIntyre LM Tulsky JA In search of a good
death observations of patients, families, and
providers Ann Intern Med 2000 May
16132(10)825-32
10
What matters most to patients families
? Talking with patients in an honest and
straightforward way ? Willingness to talk
about dying ? Giving bad news in a sensitive
way ? Listening to patients ? Encouraging
questions from patients ? Sensitivity to when
patients are ready to talk about death
Wenrich MD, Curtis JR, Shannon SE, Carline JD,
Ambrozy DM, Ramsey PG Communicating with dying
patients within the spectrum of medical care from
terminal diagnosis to death Archives of Internal
Medicine, 2000
11
7-steps for structuring communication regarding
care at the end of life

• Prepare by confirming facts establishing
  environment
• Establish what the patient (and family) knows
• Determine how information is to be handled
• Deliver information in sensitive, straightforward
  manner
• Respond to emotions of patients, parents,
  families
• Establish goals for care and treatment priorities
• Establish an overall plan

von Gunten CF, Ferris FD, Emanuel LL Ensuring
competency in end-of-life care communication
and relational skills. JAMA 2000284(23)3051-30
57.
12
Palliative Care
Interdisciplinary care for persons with
life-threatening illness or injury which
addresses physical, emotional, social and
spiritual needs and seeks to improve quality of
life for the ill person and his or her family.
13
Hospice and Palliative Care
Palliative Care
Hospice Care
14
Typical Services of Palliative Care

• An interdisciplinary team
• 24/7 availability
• Ongoing communication
• Advanced care planning
• Formal symptom assessment treatment
• Crisis prevention early crisis management
• Care coordination
• Spiritual care
• Anticipatory guidance
• Bereavement support

15
Sequential Model of Care
Curative Life-Prolonging Treatment
Hospice
Diagnosis of serious illness
6 month prognosis
16
Palliative Care in the Course of Illness
Life Prolonging Therapy
Death
Diagnosis of serious illness
Palliative Care
Medicare Hospice Benefit
17
Goals of Palliative Care
Alleviation of symptoms and suffering are our
first priorities
18
Symptom Management Goals of Therapy

• Alleviate distress
• Minimize side effects treatment burden
• Improve quality of life
• Maximize independence and control

19
Palliative Care is intensive care
20
Symptom Management Treatment Modalities

• Analgesic treatment
• Adjuvants (co-analgesics)
• Regional Anesthesia
• Neurosurgical procedures
• Behavioral, psycho-emotional techniques
• Complementary therapies

21
Pain is soul destroying. No patient should
have to endure intense pain unnecessarily. The
quality of mercy is essential to the practice of
medicine here, of all places, it should not be
strained.
Marcia Angell The Quality of Mercy NEJM Vol.
306, No. 2, pp 98-99, 1982
Deidre Scherer collection
22
Terminal Agitation DDX

• Pain
• Withdrawal
• Akasthesia
• Status epilepticus
• Hypoxia
• Bladder distention
• Rectal distention

23
Medications used for Terminal Sedation
Quill, TE, Byock, IR Responding to Intractable
Terminal Suffering Annals of Internal Medicine,
Vol. 132, No. 5, March 7, 2000, pp 408-414
24
Cassells Dimensions of Personhood
Transcendent Dimension
Friends Family
Past Memories
Sense of Meaning
Personality and Character
Politics
Habits
Body
Secret Life
Cultural Background
Un- conscious
Social Roles
Perceived Future
25
Nature of Suffering
Suffering occurs when an impending destruction
of the person is perceived it continues until
the threat of disintegration has passed or until
the integrity of the person can be restored in
some other manner.
Eric Cassell Nature of Suffering and the Goals
of Medicine NEJM 30611 1982 639-641
26
Nature of Suffering
Loss of Meaning and Purpose
Viktor Frankl Man's Search For Meaning Washington
Square Press, New York 1984
27
Goals of Palliative Care
Alleviation of symptoms and suffering are our
first priorities
28
Goals of Palliative Care
but they are not the ultimate goals.
29
"All the truly significant emotional options
remain available until the moment of death
love, hate, reconciliation, self-assertion, and
self-esteem."
Myrna Lewis, Robert Butler Life-review therapy,
Putting memories to work in individual and group
psychotherapy", Geriatrics, November 1974, vol.
29, 165-173
30
Goals of Palliative Care

• Preservation of Opportunity
• Communicating
• Completing affairs relationships
• Resolving relationships
• Grieving
• Reviewing life exploring meaning purpose
• Exploring spiritual transcendent realms

31
Completing Relationships Saying The Four Things
That Matter Most

• Please Forgive Me
• I Forgive You
• Thank You
• I Love You

32
Palliative Care in the Hospital

• Goals of care clarification
• Pain Symptom assessment treatment
• Family support
• Counseling Anticipatory Guidance
• Adaptation to illness prognosis
• Issues of life completion closure
• Discharge planning
• Planning for home care
• Transition to home hospice

33
Palliative Care in the Hospital
Can the team deliver a patient from anonymity?

• Who is she?
• Who was she at the top of her game?
• What defines her? Is she more than lung Ca
  dying crippled unresponsive?

Ned H. Cassem, MD Consultation Psychiatrist , MGH
Professor, Harvard Medical School
34
Palliative Care in the Hospital Therapeutic
Communication
I want to make sure you receive the best care
possible. In addition to all the treatments for
this disease, that includes attending to your
symptoms and sense of well-being. In focusing
on your physical health, I dont want to ignore
how this illness affects your personal life, your
feelings, your hopes and fears, as well as those
of your family.
35
Palliative Care in the Hospital Therapeutic
Communication
Ive read your medical records and feel I know
a lot about your physiology and the treatments
you have had, but the records tell me little
about you as a person.
36
Palliative Care in the Hospital Therapeutic
Communication
Can you tell me a bit about yourself? Where
did you grow up? What sort of work do (or did)
you do? What you like to do when you are not
working? I also want to know about your
living situation and your family.
37
Palliative Care in the Hospital Therapeutic
Communication
As you look to the future, what frightens you
most? Sometimes, a serious illness or injury
such as this can shake peoples faith in God or
otherwise threaten their spiritual well-being.
How has this illness affected your beliefs or
faith?
38
Palliative Care in the Hospital Therapeutic
Communication
Often people who survive a near-fatal accident
or who are diagnosed with a life-threatening
condition say that the experience changes their
priorities in life. Has this occurred for
you? What is most important in your life now?
39
Palliative Care in the Hospital Therapeutic
Communication
If you were to die suddenly, as any of us
might, would there be important things left
undone? Are there important projects that
would be left incomplete unless they were turned
over to others? Are there people you would have
wanted to visit at least one more time? Are there
important things that would be left unsaid to
significant people in your life?"
40
Palliative Care in the Hospital Therapeutic
Communication
Even if a time comes when we are unable to
realistically hope for cure, there will always be
things we can do to improve your comfort and
quality of life. Ill walk those difficult steps
with you, too.