1. “Doctor, Your Patient Is Dying!”
Brenda Matti-Orozco, MD
Chief, Division of General Internal Medicine & Palliative Medicine
Morristown Medical Center
July 1, 2016

2. Objectives
Understand the ethical and legal basis of advance directives and DNR decisions
Know the process of dying
Identify patients who are dying
Apply the procedure in pronouncing death
Complete a death certificate properly

3. True or False A lawyer is required to complete an advance directive.
It is not appropriate to begin advance care planning on an outpatient basis.
The doctor can be the durable power of attorney for health care.
Once a person names a proxy in an advance directive, they lose control of their own care.

4. Case Review: Karen Ann Quinlan, 1976
Alcohol & tranquilizers, age 21 –
April 15, 1975
Respirator removed – May 22, 1976
Died, age 31 –
June 11, 1985

5. Morristown Medical Center’s Claim to Fame on Death & Dying
Quinlan’s father petitioned Superior Court in Morristown to remove life support
Attending Physician, Dr. Joseph Fennelly
Landmark decision: allow families and other surrogate deciders the right to refuse treatment that could not return the patient to a thinking, feeling, loving state of life.

6. 1990 Patient Self-Determination Act
Applies to all health facilities that participate in the Medicare/ Medicaid program
Concept of patient autonomy

7. Ethical Basis: Patient Autonomy
Every individual has a right to determine what will be done to his or her body

8. Legal Basis Common-law right of self-determination
Constitutional right of privacy
Right of liberty

9. New Jersey Advance Directives For Health Care Act
New Jersey recognizes the fundamental right of adults with decision-making capacity
To control decisions about their own health care
To plan ahead for health care decisions through the execution of advance directives

10. New Jersey Advance Directives For Health Care Act
IMMUNITIES: A health care representative or professional or institution shall not be subject to criminal or civil liability for any actions performed in good faith and in accordance with the provisions of this act to carry out the terms of an advance directive.
The withholding or withdrawing of life-sustaining treatment shall not constitute homicide, suicide, assisted suicide, or active euthanasia.

11. Health Care Providers’ Rights & Responsibilities
Document the existence or absence of an advance directive
Document when the advance directive is activated
Document reaffirmation, modification, or revocation of an advance directive
Comply with the patient’s wishes OR
May decline to participate in carrying patient’s wishes in accordance with his sincerely held personal or professional convictions
Inform and assist in transferring the patient to another health care provider to assure that patient is not abandoned or treated disrespectfully.

12. Advance Care Planning Documents
Healthcare Proxy or Durable Power of Attorney for Healthcare
Living Will or Instruction Directive
DNR (Do Not Resuscitate) Order
OOHDNR (Out-of-Hospital Do Not Resuscitate) Order
DNI (Do Not Intubate) Order
DNH (Do Not Hospitalize) Order
POLST (Practitioner Orders for Life Sustaining Treatment)

13. Steps in Advance Care Planning
Introduce the topic and give information to the patient.
Facilitate the discussion.
Complete directive and document in medical record.
Review and update directive.
Apply directive when patient is unable to communicate.

14. DNR Discussion in the Hospital Setting
Establish the setting
What does the patient understand?
What does the patient expect?
Discuss a DNR order
Respond to emotions
Establish a plan
Manage persistent requests for CPR

15. IMPACT OF PROGNOSTICATION Murphy DJ, et al. NEJM 1994;330:545-549
371 adults,
65 years & older
Before learning true
survival probability:
41% wanted CPR
After learning true
22% wanted CPR
If life expectancy
is less than 1 year:
5% wanted CPR
Why is prognostication so important?
Appropriate prognostic information is essential for informed treatment decisions and advance care planning. Patients who overestimate their life expectancy or think treatments are more effective than proven might put off preparing themselves and their family for the end of their lives. Denial of prognosis may impede communication and planning about death, and may lead to unrealistic requests for treatment.
Murphy et al in 1994 showed that people change end-of-life care decisions based on their perception of prognosis. He asked 371 adults age 65 or older if they wanted CPR in case of arrest during an acute illness. Before learning the true probability of survival, 41% wanted CPR. After learning the true probability of survival, only 22% wanted it. If asked about a chronic disease, in which the life expectancy was less than one year, only 5% wanted CPR.
Unfortunately, physicians are poor prognosticators. We are only accurate 20% of the time, often erring on the side of overestimation by a factor of 5.3, colored by the duration of our relationships with our patients. Obtaining a second opinion on prognosis from a palliative care consultation can be helpful.

16. Area under the curve equals 100% of all health care
expenditures over a life span. E X P N D I T U R S
Annual cost for Medicare = $44.9 billion
Changes in the way Americans die are mirrored in health care cost patterns. The overwhelming preponderance of U.S. health care costs now arise in the final years of life.
This figure presents a rough estimate of health care costs distributed across the average American’s lifetime. The final phase of life, when living with eventually fatal chronic illnesses, has the most intense costs and treatments. Medicare is the largest funding source for end-of-life care, serving more than 80% of the 2.4 million people who die in the United States each year. Approximately one-quarter of Medicare’s annual budget is spent on its beneficiaries’ last year of life, incurring an annual cost of $44.9 billion.
Payments for dying patients increase exponentially as death approaches, and payments during the last month of life constitute 40% of payments during the last year of life.
Death
Birth
Life span
RAND Health, 2003

17. “Doctor, Your Patient is Dying!”
A 67-year-old woman with pancreatic cancer metastatic to liver comes to the hospital together with her husband. Over the past 4 weeks, she has lost her appetite and experienced steady weight loss. She spends > 75% of the day in bed or lying on a couch because of fatigue. Her oncologist has indicated that there is no role for further chemotherapy.

18. Case Example 1
The single best predictive factor in determining prognosis in patients with metastatic cancer is:
A. functional ability
B. number of metastatic lesions
C. serum albumin
D. severity of pain

19. PROGNOSTICATION Only 20% accurate
FUNCTIONAL ABILITY: single most important predictive factor

20. FUNCTIONAL ASSESSMENT
Activities of Daily Living (ADLs)
Instrumental Activities of Daily Living (IADLs)
D – Dressing
S – Shopping
E – Eating
H – Housekeeping
A – Ambulating
A – Accounting
T – Toileting
F – Food Preparation
H – Hygiene
T – Telephone/ Transport

21. FUNCTIONAL PERFORMANCE SCALES
ECOG
Description
KARNOFSKY
Normal, no symptoms
100 1
(+) symptoms, self-care
70 – 90 2
In bed < 50% waking hrs
50 – 60 3
In bed > 50% waking hrs
30 – 40 4
In bed 100% waking hrs
10 – 20 5
Moribund, death

22. DYING TRAJECTORY: Cancer Death
RAND Health, 2003
High F U N C T I O
Low
Time
Death

23. DYING TRAJECTORY: Organ Failure
Terminal
Phase
RAND Health, 2003
High F U N C T I O
Low
Time
Death

24. DYING TRAJECTORY: Neurological, Dementia
High F U N C T I O
Low
RAND Health, 2003
Time
Death

25. COMMUNICATION
The key to quality end-of-life care is a trusting physician-patient relationship and satisfying communication. Everyday we spend much of our working day talking to patients. Yet, studies, surveys, and experts contend that overall we perform poorly when sharing bad news and prognosis with patients, communicating about dying and end-of-life care, providing physical and emotional support, and discussing issues such as advance directives, living wills, resuscitation, and hospice care.
In the SUPPORT trial, only 47% of physicians knew that their patients preferred to avoid CPR. It also documented that the care provided to patients is often not consistent with their preferences.
Most patients and families expect an honest but compassionate manner of communication, with the assurance of non-abandonment, shared decision-making, and coordination of care across settings. Avoid ambiguous terms in prognostication such as poor, grave, grim. Don’t hesitate to say that patient is dying and express it in a time frame, such as within a few hours to a few days, a few days to a few weeks, or a few weeks to a few months. This may allow patients and families to put things in better perspective. Avoid confusing families as to the true prognosis in a dying patient – just because things are going badly again doesn’t mean that the prognosis has changed for the better.

26. “Doctor, Your Patient is Dying!”
The patient asks you: “so how much time do you think I have?” After further discussion with the patient and her husband, you confirm that they want to talk about her prognosis.

27. Case Example 1 The best approach is to tell them that:
A. On average, patients with her condition live for about 6 to 9 months
B. Only God knows!
C. You believe her time is short, only a few weeks to a few months
D. You really can’t tell how much time she has left

28. Survival Time: < 6 Months
Untreated metastatic solid cancer, acute leukemia, high-grade lymphoma
Malignant ascites
Malignant pleural effusion
Malignant bowel obstruction, inoperable
Serum albumin < 2.5
Significant weight loss in severe COPD
Multiple brain metastases, with radiation

29. Survival Time: < 3 Months
Malignant hypercalcemia: 8 weeks (except newly diagnosed breast cancer or myeloma)
Malignant pericardial effusion: 8 weeks
Carcinomatous meningitis: 8-12 weeks
Multiple brain metastases: 1-2 months, without radiation

30. When people are dying they want…
To be kept clean
To name a decision maker
To have someone who will listen to their fears
To have financial affairs in order, including funeral arrangements
To be free from pain, difficulty breathing, and anxiety
To maintain mental awareness
To not be a burden on family or society
To discuss what to expect as they are dying
From the Journal of Pain and Symptom Management, September 2001, -- K.E. Steinhauser lists what the dying have said they want…
This slide is related to their physical needs. Refer to the handout in the manual for additional needs.
These desires as expressed by the dying require the involvement of another:
Someone who will listen to their desires and speak for them when they can no longer points out the importance of advance directives.
Someone who is not afraid to listen to their fears about dying.
Someone to help them make the needed arrangements for their worldly affairs.
Someone who will help them manage the symptoms they may have.
To be able to stay alert enough to stay engaged with the world around them as long as possible.
To be independent as long as possible and to have arrangements made for their period of dependency.
Someone to tell them what it will be like as they die and how they can be kept comfortable in each instance.
(Also the spiritual needs as described in the spirituality section)
When we can no longer help the living to be cured of disease, we can still offer hope and comfort for peace, comfort, and meaning in the dying process.
Circle of Life Community Coalition End of Life Toolkit
Revised May 2006

31. Physical Signs of Dying
Increasing pain
Increasing weakness
Decreasing appetite
Restlessness and/or confusion
Sleeping more of the time
Increase of shortness of breath
Increasing pain may indicate increasing tumor growth in a cancer patient.
Increasing weakness may come as a result of decreasing appetite and the body’s inability to benefit from nourishment and/or also from advancing disease.
Decreasing appetite is a common symptom and may advance to the point where a person may stop eating altogether.
Restlessness and confusion may be a result of inadequately treated pain but may also occur as a normal part of dying process.
Sleeping more or most of the time is a difficult symptom for family and caregivers to cope with because it separates them from being in contact with their loved one.
Increasing shortness of breath can signal progression of lung or cardiac disease.
Circle of Life Community Coalition End of Life Toolkit
Revised May 2006

32. Spiritual and Emotional Signs
Withdrawal from society, friends, family; more inwardly focused
Increased fears, including fear of being left alone
Increased awareness of spiritual and/or religious issues
Some of the physical symptoms like sleeping contribute to the withdrawal from friends and family. “Sleeping” also indicates the individual is pulling inward to process the dying. Sometimes this processing may look like sleep.
Fears that never were there before may surface- the fear of dying alone.
An individual may begin talking about God or seek spiritual counsel when they never have before.
Circle of Life Community Coalition End of Life Toolkit
Revised May 2006

33. There may be some more unusual and puzzling signs…
Moments of clear thinking and speaking
Sudden increased energy
Statements about “going home” or “packing bags”
Speaking about or to people who have already died
Saying goodbye to family and friends
Maybe the individual has not said anything coherent for days then suddenly is having normal conversation.
One who has been bed bound may want to get up and walk.
There may be conversations that don’t make sense to anyone about getting ready to go home or buying a ticket or packing one’s bags.
The dying person may begin to talk to someone who doesn’t seem to be there or has already died. They may ask if you see them too.
Circle of Life Community Coalition End of Life Toolkit
Revised May 2006

34. SYNDROME OF IMMINENT DEATH EPERC Fast Facts and Concepts, 2000
Decreased oral intake
Cognitive changes/ delirium
Early
“Death Rattle”
Fever
Worsening mentation
Middle
Change in vital signs
Coma & death
Late
NAME OF PRESENTATION IN ALL CAPS (INSERT IN FOOTER)

35. Curative / life-prolonging therapy Relieve suffering (hospice)
Figure 1: Traditional Model of Palliative Care
Curative / life-prolonging therapy
In the frail elderly patient, the concept of dying has become less clear. The recognition in the late 1960s that some patients were “dying” and thus not appropriately treated with aggressive interventions was a radical one in American health care and spawned the hospice movement in the 1970s. The sharp transition in which patients come to be “dying” by becoming “terminally ill,” does not apply well to most chronically ill elderly.
Presentation
Death
Relieve suffering (hospice)

36. Curative / life-prolonging therapy Relieve suffering (palliative care)
Figure 2: Integrated Model of Palliative Care
Curative / life-prolonging therapy
Hospice
For frail elderly patients early in the course of their illness, many need both curative treatment as well as palliative care aimed at treating symptoms; and late in life, some treatments may still stall the progression of illness, even while most needs are for relieving symptoms and providing support.
Palliative care need not be reserved for those who are very close to death. Rather, it could be available soon after diagnosis so that patients can learn about and adjust to their illness early on from a team of professionals trained to administer to social issues, psychological issues, pastoral and existential issues, and financial issues that are all part of a comprehensive personalized care. By moving palliative care upstream, this approach would allow terminally ill patients to draw on these resources and continue to function at a high level in society for an extended period of time.
Presentation
Death
Relieve suffering (palliative care)

37. Curative / life-prolonging therapy Relieve suffering (palliative care)
Figure 3: Parallel Model of Palliative Care
Curative / life-prolonging therapy
Hospice
For frail elderly patients early in the course of their illness, many need both curative treatment as well as palliative care aimed at treating symptoms; and late in life, some treatments may still stall the progression of illness, even while most needs are for relieving symptoms and providing support.
Palliative care need not be reserved for those who are very close to death. Rather, it could be available soon after diagnosis so that patients can learn about and adjust to their illness early on from a team of professionals trained to administer to social issues, psychological issues, pastoral and existential issues, and financial issues that are all part of a comprehensive personalized care. By moving palliative care upstream, this approach would allow terminally ill patients to draw on these resources and continue to function at a high level in society for an extended period of time.
Presentation
Death
Relieve suffering (palliative care)

38. Role of In-Patient Hospice & Palliative Unit on Simon 3
Comprehensive assessment of patient and family needs
De-escalation of diagnostic and invasive treatment
Aggressive symptom management
Goals of care and treatment plan review, revision and facilitation
Determine prognosis, hospice eligibility and admission
Discharge planning, coordination and implementation
Prioritizes patients coming from the ED, MICU, SICU, and CCU

39. Do you know the difference?
Palliative Care
Includes hospice
Can be provided by specialists or a primary team
Appropriate at any age or stage in serious illness
Can be provided along with curative care
Hospice Care
Medicare health insurance benefit
Is palliative care provided by a hospice agency
Aggressive, curative treatments are not typically a part of a hospice plan
Prognosis is likely < 6 months
if disease follows its natural
course
There is confusion over the difference between Palliative care and hospice,
Improving the quality of their life for patient and family. Relief from the symptoms and stress of the illness.
Both focus on providing comfort, symptom management , emotional support to patients with serious, chronic and life threatening illness.
Working with patients and their families.
Care, location, timing, payment and eligibility

40. General Inpatient (GIP) Level of Hospice Care Criteria
Pain requiring:
Complex delivery systems (eg. prn IV medications,
epidural medications)
Frequent evaluation by physician/nurse
Frequent medication adjustment
Aggressive treatment to control pain or non-pain symptoms
Uncontrolled nausea and vomiting
Transfusions for symptom relief
What is the symptom that requires this level of care
Can they be managed at home
How often adjustments are being made to manage the symptoms.
Overview of Hospice

41. GIP Level of Hospice Care Criteria
Respiratory distress requiring therapies that cannot be delivered in another setting
Severe delirium, agitation, anxiety or depression requiring intensive nursing interventions
Imminent death alone does not qualify a
patient for the GIP level of hospice care
The assessment of whether or not the patient meets GIP level of care can be difficult
In general a patient should be able to managed at the routine level of care if symptoms are managed with little or no need for breakthrough medications or titration of medications
This is true even if the patient requires IV medication: IV’s can be managed in a nursing facility or at home with caregiver teaching.
It is important to remember that the GIP level of care is meant to be short term and should include a plan to move the patient to another level of care when symptoms are managed.
This plan can include teaching family caregivers how to give medications, administer treatments and manage equipment. It can also include transitioning patients from IV to oral medications
Documentation to support the need for GIP level of care by hospital as well as hospice staff is crucial. Eg : There is a large difference between “ resting comfortably” and “ pain currently controlled by a continuous subcutaneous morphine infusion at 3 mg /hr but still requiring 2 breakthrough doses overnight to maintain comfort”
Overview of Hospice

42. Issues in General In-Patient Hospice Care
Key components for General In-Patient (GIP) Hospice enrollment:
Patient’s Consent and
Hospice Social Work Assessment and
Hospice Nurse’s assessment and
Hospice Plan of Care

43. Issues in General In-Patient Hospice Care
Discharge Order from the hospital
Order on CPOM – “Discharge to Hospice”
Primary team completes discharge instruction and discharge summary
GIP Hospice Admission during patient’s hospitalization
Admission Order to Hospice after Admitting Office creates a new account
Hospice Admission Note within 24 hours
Primary team follows Hospice Plan of Care
Primary team follows Hospice Discharge Plan
Primary team completes discharge instruction, prescriptions and discharge summary

44. “Doctor, Your Patient Has Died!”
Two days later the patient dies in the hospital. You are called to “pronounce the patient.” As you enter the room, there are four family members standing around the bed, each holding or touching the woman.

45. Case Example 2
Which of the following is NOT appropriate during this encounter:
A. Ask the family to leave the room while you perform your examination
B. Inquire if the family has given thought to an autopsy
C. Offer to contact family members not present
D. Remove medical paraphernalia

46. “Doctor, Your Patient Has Died!”
Prepare before entering the patient’s room
Sudden or expected?
Is family present or notified?
Details on the circumstances of death
Faith tradition?
Has the attending physician been called?
Consent for autopsy
Organ Donor Network

47. Death Pronouncement in the Hospital
Introduce yourself
Explain what you are there to do
Family may stay if they wish
Examine the patient
Record time at which your assessment was completed
Empathetic statements
“I am sorry for your loss; this is a difficult time.”
Ask if the family has any questions

48. Death Pronouncement in the Hospital
Check ID bracelet and pulse
Check pupils for position and response to light
Check response to tactile stimuli
Examine respectfully
No sternal rubs or nipple pinches
Check for spontaneous respiration
Check for heart sound and pulses
Record time of death

49. Death Pronouncement in the Hospital
Documentation in the Medical Record
Called to pronounce (patient’s name)
Chart findings of physical examination
Note date and time of death
Note if family and attending physician were notified
Document if family declines or accepts autopsy
Document if the coroner was notified

50. Deaths Reported to the Medical Examiner’s Office
Involving a homicide or trauma
Occurring under unusual circumstances
Posing a threat to public health
Involving inmates in prison
Any prisoner who is a patient in a hospital regardless of duration of hospitalization
Where children die unexpectedly

51. Death Certificates
The death certificate is the official record of death. It is used to settle the estate, collect life insurance, transfer property and for other post death activities.
Funeral directors gather, enter and submit the needed information into an Electronic Death Registration System (EDRS).

52. Electronic Death Registration System (NJ-EDRS)
The New Jersey Electronic Death Registration System (NJ-EDRS), provides a secure method for electronically creating, updating and certifying death certificates. The use of NJ-EDRS by all who participate in the death registration process is mandatory under New Jersey state law.
The NJ-EDRS can be found online at

53. Death Certificate

54. 2 Roads to Death THE DIFFICULT ROAD Confused Tremulous Restless
Hallucinations
NORMAL
Mumbling Delirium
Sleepy
Myoclonic Jerks
Lethargic
Seizures
Obtunded
THE USUAL
ROAD
Semicomatose
Comatose
DEATH

55. Spiritual / Existential
Integrated Model
Curative or
Life-prolonging
Bereavement
Spiritual / Existential
Death
Life Closure
Family Issues
This model represents the integration of palliative care in curative or life-prolonging care and then the transition to noncurative hospice care.
In both curative and noncurative focus of care the management of symptoms whether physical, emotional or spiritual is essential to the well-being of the individual.
Palliative
Care
Hospice Program
Symptom Control
Circle of Life Community Coalition End of Life Toolkit
Revised May 2006

56. Role of Physicians
“Appropriate treatment for a patient need not include every effort (or at all cost) to prolong life regardless of its quality…”