END OF LIFE CARE

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ASSESSMENT of DECISION-MAKING CAPACITY

Areas of Ability and Specific Questions

1. Ability to
- What problem are you having right now?
- Why are you in the hospital?
2. Ability to understand the proposed treatment.
- What is the treatment for [your problem]?
- What can we do to help you?
3. Ability to understand the alternatives to proposed treatment (if any).
- Are there any other treatments?
- What other options do you have?
4. Ability to understand the option of refusing treatment (including withdrawing treatment).
- Can you refuse [the treatment]?
- Can we stop [the treatment]?
5. Ability to appreciate the reasonably foreseeable consequences of accepting treatment.
- What could happen to you if you have [the treatment]?
- How could [the treatment] help you?
- Could [the treatment] cause problems or side effects?
6. Ability to appreciate the reasonably foreseeable consequences of refusing proposed treatment.
- What could happen to you if you don't have [the treatment]?
- Could you get sicker/die without [the treatment]?
7. Ability to make a decision that is not substantially based on hallucinations, delusions, or cognitive signs of depression.
- Why have you decided to accept/refuse [the treatment]?
- Do you think we are trying to hurt/harm you?
- Do you deserve to be treated?
- Do you feel that you are being punished?
- Do you feel that you are a bad person?

**Based on your patient’s answers to these questions, you will need to use your own clinical judgment as to that patient’s decision- making capacity.
**Your patient’s capacity for a particular decision may vary depending on the complexity of that decision and her/his level of executive functioning.

References
Appelbaum, P. and Grisso, T. "Assessing Patients’ Capacities to Consent to Treatment." NEJM. Dec. 22, 1988.
Appelbaum, P. and Gutheil, T. Clinical Handbook of Psychiatry and the Law, Ed. 2. Baltimore: Williams & Wilkins, 1991.

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BRAIN DEATH and ORGAN DONATION

If a patient is very likely to be heading toward brain death (has lost 2 or more brain stem reflexes — see below) and might be an organ donor, do not mention organ donation to family yet, but call LifeSource at 1-800-247-4273.

LifeSource will come immediately to the hospital to help with the evaluation and the family communication. Brain death testing should be performed with LifeSource present.

After initial brain death testing is confirmatory, physician should explain brain death to the family and introduce the LifeSource personnel to jointly discuss the organ donation option. LifeSource will obtain the informed consent for donation from the family once brain death is conclusive.

Brain death criteria

  1. Cause of condition is known.
  2. Exclusion of complicating medical conditions (severe electrolyte, acid-base, endocrine, infectious)
  3. No drug intoxication or poisoning
  4. Core temperature at least 32° C
  5. Cerebral unresponsiveness
  6. Absence of brain stem reflexes:
    1. Pupillary response (no response to bright light). Size - mid-position (4 mm)
    2. Oculocephalic reflex absent (no deviation of eyes to ear side being irrigated with 50 mL of cold water for 1 minute; allow 1 minute after injection and at
    3. Facial motor response and sensation absent (No jaw reflex, no grimacing to deep pressure on nail bed, supraorbital ridge, or temporomandibular joint. No
    4. Pharyngeal/tracheal reflexes (No response after stimulation of the posterior pharynx with tongue blade. No cough response or bradyarrhythmyia to bronchial suctioning.
  7. Apneic by testing
    1. Prerequisites: Core temperature at least 36.5° C; systolic BP > 90 mm; corrected diabetes insipidus or at least positive fluid balance in last 6 hours; 2= 40; pre-oxygenate to obtain arterial pO2 = 200;
    2. Method: Connect pulse oximeter and disconnect the ventilator; observe for respiratory motion; draw ABG and reconnect the ventilator after about 8 minutes. Reconnect the ventilator earlier if systolic BP drops lower than 90 or pulse oximeter indicates significant O2 desaturation and arrhythmias develop. Draw ABG
    3. Interpretation: patient is apneic if no respiratory motion and pCO2 is = 60
  8. Condition is irreversible: usually repeat testing would be performed after 6
  9. Optional confirmatory tests (in order of sensitivity): angiography, EEG, TCD ultrasonography, technetium 99m brain scan, SSEP

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DEATH PRONOUNCEMENT in the HOSPITAL
What do residents need to know?

Residents have traditionally had little formal training in examining patients to determine death, notifying families, and in recording proper documentation.

The Phone Call: "Please come and pronounce this patient."

Preparation Before You Enter the Room

In the Room

The Pronouncement

Documentation in the Medical Record

Adapted from Housestaff presentation prepared by Charlotte Heidenreich, MD, Department of Internal Medicine, Medical College of Wisconsin

References
Marshall SA, Ruedy J. On Call: Principles and protocols. Philadelphia, Saunders
Marchand LR, Kushner KP. Death Pronouncement: survival tips for residents. American Family Physician, July 1998. www.aafp.org/afp/980700ap/rsvoice.html
Magrane BP, Gilliland MGF, King D. Certification of Death by Family Physicians. American Family Physician, October 1997, 1433-8.

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DEATH REPORTING to the MEDICAL EXAMINER

CASES THAT MUST BE REPORTED

Deaths occurring in Hennepin County regardless of where the injury occurred must be reported if the following criteria are met:

All sudden or unexpected deaths and all deaths which may be due entirely, or in part, to any factor other than natural diseases must be reported. These include, but are not limited to:

  1. Unnatural deaths including violent deaths (homicidal, suicidal, or accidental);
  2. Deaths associated with burns or chemical, electrical, or radiation injury;
  3. Maternal deaths due to abortion;
  4. Deaths under suspicious circumstances;
  5. Deaths of inmates of public institutions who have not been hospitalized primarily for organic disease, and deaths of persons in custody of law enforcement officers;
  6. Deaths that occur during, in association with, or as the result of diagnostic, therapeutic, or anesthetic procedures;
  7. Deaths due to neglect;
  8. Stillbirths of 20 weeks or longer gestation unattended by a physician;
  9. Sudden deaths of persons not disabled by recognizable disease;
  10. Sudden deaths of persons not withstanding a history of underlying disease;
  11. Deaths of persons to be cremated;
  12. Deaths in which a fracture of a major bone (femur, humerus, tibia, etc.) has occurred within the past six months;
  13. Deaths occurring outside of a licensed health care facility; (e.g. patients in hospice who die at home);
  14. Deaths of unborn or newborn infants in which there has been maternal use of or exposure to unprescribed controlled substances.
  15. Any death of a person who has not been seen by a physician within 90 days must be reported.
  16. Any death in which there is uncertainty as to whether it is a medical examiner’s case should be reported and discussed with the medical examiner’s investigator.
  17. Patients who are expected to die at home and are registered with an official Hospice Program may be reported to the Medical Examiner’s Office prior to their demise. Pre-reporting will help expedite matters once death occurs, however, the death must still be reported.
  18. Occupationally associated deaths attributable entirely or in part to external workplace factors should be reported.

PROCEDURES

When a death which falls into any of the above categories occurs, the physician, police officer, mortician, or other individual connected with the case should report it promptly (24 hours a day) to the Medical Examiners Office by telephone 612-215-6300 (Hennepin Co.) or 651-224-7627 (Ramsey Co). Indicate to the person answering the telephone that you are reporting a case. After initial information has been obtained, you will be referred to the investigator on duty or your number will be taken for him/her to return your call. After making an investigation, the ME office will decide if the Medical Examiner has jurisdiction of the case. When this is the case, ONLY the Medical Examiner can sign the death certificate.

Further information is available from either of the Medical Examiner offices mentioned above.

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DELIVERING BAD NEWS
Bruce Ambuel, PhD

Question: What steps do you take to prepare to give bad news before talking with the patient?

Create an appropriate physical setting: A quiet, comfortable room, turn off beeper, check personal appearance, have participants, including yourself, sitting down.

Determine who should be present. Ask the patient whom they want to participate--clarify relationships to patient. Decide if you want others present (e.g. nurse, consultant, chaplain, social worker) and obtain patient/family permission.

Think through your goals for the meeting as well as possible goals of the patient.

Make sure you know basic information about the patient’s disease, prognosis, treatment options.

Special circumstances: Patient not competent (developmentally delayed, dementia, etc.) Make sure legal decision-maker is present.

Special circumstances: Patient doesn’t speak English. Obtain a skilled medical interpreter if the patient or family do not speak English. Use ATT translation service or other phone service as necessary.

Self-reflection: Physicians will invariably have strong emotions when they have to give bad news. This emotional response can be heightened by various factors—a young patient, an unexpected diagnosis, a patient with whom the physician has a long-standing relationship, etc. Take some time before and after the encounter to recognize your own reactions and attend to them.

Case Scenario: You are caring for a previously healthy 52 y/o man with one-month of abdominal pain and weight loss. On exam he had a 2 cm hard left supraclavicular lymph node. A CAT scan showed a focal mass with ulceration in the body of the stomach and numerous densities in the liver compatible with liver metastases. The radiologist feels that the findings are consistent with metastatic stomach cancer. How do you discuss these test results with the patient?

Main Points:

Determine what the patient & family knows; make no assumptions. Examples: "What is your understanding of your present condition?" "What have the doctors told you?"

Before presenting bad news, consider providing a brief overview of the patient’s course so that every one has a common source of information.

Speak slowly, deliberately and clearly. Provide information in small chunks. Check reception frequently

Give fair warning --"I am afraid I have some bad news" then pause for a moment.

Present bad news in a succinct and direct manner. Be prepared to repeat information and present additional information in response to patient and family needs.

Sit quietly. Allow the news to sink in. Wait for the patient to respond.

Listen carefully and acknowledge patient’s and family’s emotions, for example by reflecting both the meaning and emotion of their response.

Normalize and validate emotional responses: feeling numb, angry, sad, and fearful.

Give an early opportunity for questions, comments.

Present information at the patient’s or family’s pace; do not overwhelm with detail. The discussion is like pealing an onion. Provide an initial overview. Assess understanding. Answer questions. Provide the next level of detail or repeat more general information depending upon the patient's and family's needs

Assess thoughts of self-harm.

Agree on a specific follow-up plan ("I will return later today, write down any questions."). Make sure this plan meets the patient’s needs. Involve other team members in follow-up.

Points:

Resources
Buckman R. How to break bad news: A guide for health care professionals. Johns Hopkins University Press, 1992.
Faulkner A. Breaking bad news--a flow diagram. Palliative Medicine 1994:8;145-151.
Iverson, VK. Pocket protocols—Notifying survivors about sudden, unexpected deaths. Galen Press, Inc., Tucson, Arizona, 1999.
Ptacek, JT, Eberhardt, TL. Breaking bad news: A review of the literature. JAMA, 157:323, 1996.

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DETERMINING PROGNOSIS in ADVANCED CANCER
David E. Weissman, MD

"How long do I have, doc?", is among the most common questions asked by cancer patients, especially when informed that there are no further effective anti-neoplastic treatment options. Although prognostication is not an exact science, there is abundant data to help clinicians provide useful information to patients and families, information critical to making realistic end-of-life decisions and referrals for home hospice service. Physicians and patients tend to be "mis-calibrated" towards excessive optimism when it comes to determining prognosis. In addition many physicians feel uneasy either making a determination of limited prognosis and/or communicating that prognosis to patients. This has resulted in short lengths of stay for patients in home hospice programs. Hospice care is most effective if the duration of care is on the order of months, not days to weeks.

The single most important predictive factor is Functional Ability; a measure of how much a patient can do for themselves, of their activity and energy level. Note: patients with solid tumors typically lose 70-80% of their functional ability in the last 3 months of life. The two scales used to measure functional ability are the Karnofsky Index (100 = normal; 0 = dead) and the ECOG (Eastern Cooperative Oncology Group) scale, (0 = normal; 5 = dead). A median survival of 3 months correlates with a Karnofsky score <50 or ECOG < 3. The question to ask patients is: "How much time do you spend in bed or laying down?" If the response is >50% of the time and is progressively increasing, this correlates to a median survival of 3 months. Survival time decreases for added physical symptoms, especially dyspnea, if it is secondary to the cancer.

Several common cancer syndromes have well-documented short median survival times:

In general, a patient with metastatic solid cancer, acute leukemia or high-grade lymphoma, who will not be receiving systemic chemotherapy (for whatever reason), has a prognosis of less than 6 months**. Notable exceptions to this are patients with breast or prostate cancer with good performance status; these cancers may be indolent, additional features suggesting short prognosis are needed (declining functional status, dyspnea, weight loss).

Other indicators of less than 6 months prognosis include malignant ascites, malignant pleural effusion or malignant bowel obstructionthat cannot be surgically bypassed.

**Remember, referral for care under the Medicare Hospice Benefit requires certification that the prognosis is less than 6 months if the disease follows a usual course.

References
den Daas, N. Estimating length of survival in end-stage cancer: a review of the literature. J Pain Symp Manage 10:548-555, 1995;
Lassauniere JM and Vinant P. Prognostic factors , survival and advanced cancer. J Pall Med 8:52-54, 1992;
Miller RJ. Predicting survival in the advanced cancer patient. Henry Ford Hosp Med J 39:81-84, 1991;
Ralston SH, et al. Cancer associated hypercalcemia. Ann Int Med 112:499:504, 1990;
Reuben DB and Mor V. Clinical symptoms and length of survival in patients with terminal cancer. Arch Int Med 148:1586-1591, 1988.

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DYSPNEA at the END OF LIFE

Dyspnea at end-of-life may be present during the Syndrome of Imminent Death or occur earlier in the disease trajectory. Looking for simple problems is always warranted: Is the oxygen turned on?, is the tubing kinked?, is there fluid overload from IV fluids or TPN?, is dyspnea part of an acute anxiety episode, severe pain, constipation or urinary retention?; is there a new pneumothorax or worsening pleural effusion?.  Understanding 1) where patients are at in the dying trajectory and 2) their identified goals of care, is essential to guide the extent of workup seeking reversible causes. If the patient is clearly dying, and the goals of care are comfort, then pulse oximetry, blood gas, EKG, CXR, etc. are not indicated.

Treatment–General Measures: positioning (sitting up), increasing air movement via a fan or open window, and use of bedside relaxation techniques are all helpful; decrease or discontinue use of IV fluids.

Opioids are the drug of choice for dyspnea. In the opioid-naїve patient, low doses of oral (10-15 mg) or parenteral morphine (2-5 mg), will provide relief for most patients; higher doses will be needed for patients on chronic opioids (50% over baseline). When dyspnea is acute and severe, parenteral is the route of choice: 2-5 mg IV every 5-10 minutes until relief. In the inpatient setting, a continuous opioid infusion, with a PCA dose that patients, nurses or families can administer, will provide the timeliest relief. Nebulized morphine can be used, but its relative benefit compared to PO/IV in controlled trials has not been proven.

Treatment w/oxygen nasal cannula is better tolerated than a mask, especially in the terminal setting.  Oxygen is not always helpful; a therapeutic trial, based on symptom relief, not pulse oximetry, is indicated. There is little reason to go beyond 4-6 L/min of oxygen via nasal cannula in the actively dying patient. Request a face-tent for patients who are claustrophobic from a mask.

Treatment w/Other drugs: Antitussives can help with cough, anticholinergics (e.g. scopolamine) will help reduce secretions and anxiolytics (e.g. lorazepam) can reduce the anxiety component of dyspnea.

Family/Team Discussions: While there is no good evidence that proper symptom management for terminal dyspnea significantly hastens death, the course and management of terminal dyspnea, especially when opioids are used, should be fully discussed with family members, nurses and others participating in care to avoid confusion about symptom relief vs. fears of euthanasia or assisted suicide.

References
Bruera E and Ripamonti C. Dyspnea in patients with advanced cancer. In: Principles and Practice of Supportive Oncology. Berger A, Portenoy R and Weissman DE (eds). Lippincott-Raven, 1998.
Bruera E, Stoutz N, Velasco-Levla A, et al. Effects of oxygen on dyspnoea in hypoxemic terminal cancer patients. Lancet 1993;342:13-14.
Fohr SA. The double effect of pain medication: separating myth from reality. J Pall Med 1998; 1:315-328.
Chandler S. Nebulized opioids to treat dyspnea. Am J Hosp Pall Care 1999; 16: 418-422.

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MODERATING a FAMILY CONFERENCE
Bruce Ambuel, PhD

Case scenario: Bill is a 63-year-old man admitted following a massive MI. In the ER he is stabilized, intubated and transferred to the ICU. By history he experienced an unknown period of anoxia prior to arrival of the EMTs. On exam he remains unresponsive to deep pain after 3 days. On the third day of hospitalization, Bill’s wife Susan, and three children join you for a family conference to discuss his treatment. How do you run a family conference?

I. Why: Clarify conference goals in your own mind.

II. Where: A room with comfort, privacy and circular seating.

III. Who: Patient (if capable to participating); legal decision maker/health care power of attorney; family members; social support; key health care professionals.

IV. How:

A. Introduction

B. Review medical status

C. Family Discussion w/ Decisional Patient

D. Family Discussion w/ Non-Decisional Patient

E. When there is no consensus:

V. Wrap-up:

VI. Key points:

References
Ambuel, B. Conducting a family conference. In DE Weissman & B Ambuel, Improving End-of-Life Care: A resource guide for physician education. The Medical College of Wisconsin, Milwaukee, 1999 
Fast Facts and Concepts was originally developed as an end-of-life teaching tool by Eric Warm, MD, U. Cincinnati, Department of Medicine. See: Warm, E. Improving EOL care--internal medicine curriculum project. J Pall Med 1999; 2: 339-340.

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THE SYNDROME of IMMINENT DEATH

Families and patients often ask physicians when (exactly) death can be expected. This is a difficult question, but can be used to encourage communication about fears, unfinished emotional business, or spiritual issues. It is important to "listen below the surface" of this query.

However, it is also important to be as realistic as possible and to ease the discomfort of uncertainty during the dying process. The following points are guidelines to use in counseling families about what to expect.

RECOGNITION

Early Stage: bed bound; loss of interest and ability to drink/eat, cognitive changes either hypoactive or hyperactive delirium or increasing sleepiness, low urine output

Mid Stage: further decline in mental status–obtunded, "death rattle"– pooled oral secretions that are not cleared due to loss of swallowing reflex, fever is common

Late Stage: coma, cool and mottled extremities, altered respiratory pattern – either fast or slow; fever is common, death.

TIME COURSE

The time to traverse the various stages can be less than 24 hours or up to 10-14 days. Once entered, it is difficult to accurately predict the time course, which may cause considerable family distress as death seems to linger.

TREATMENT

Once recognized, discuss with family, confirm treatment goals; write in progress note: "patient is actively dying," not "prognosis is poor"

Discuss with family goal of stopping all treatments that are not contributing to comfort–pulse oximeter, IV hydration, antibiotics, finger sticks, etc. Hydration and feeding issues will need to be discussed sensitively, often eliciting more concern among the medical team than the family

Use scopolamine patch (1or 2) or atropine to decrease oral secretions

Use morphine to control dyspnea or tachypnea; goal respiratory rate is 10-15. This will not hasten death.

Opioids used to treat pain should not be stopped as death approaches–assume that the pain stimulus is still present; families always want reassurance that their loved one is not suffering

Provide excellent mouth and skin care.

These observations can be helpful in predicting death:

6 months or less
Brain metastases treated with radiation and steroids
Malignant ascites or pleural effusion
Severe dementia with significant weight loss
CNS lymphoma (HIV)
Uncontrolled diarrhea with HIV
Heart failure or COPD with repeated hospitalizations in the past 6 months

3 months or less
Hypercalcemia (cancer-except new myeloma or breast cancer untreated)

In bed > 50% of the time
Carcinomatous meningitis
Malignant pericardial effusion
Liver metastases with jaundice

Less than 14 days
Cheyne-Stokes respirations
Anuric without dialysis
Psychological withdrawal from family and friends (in setting of cancer)
Confusion or delirium with no obvious cause
Little interest in PO intake

In bed > 90% of the time

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TAKING a SPIRITUAL HISTORY
Bruce Ambuel, PhD

Illness raises fundamental questions for patients-- For what may I hope? Why do I suffer? Does my suffering have meaning? What happens after I die? When a physician stands with a patient as they face death, the physician inevitably plays a role in supporting the patient’s inquiry into these fundamental, spiritual questions. In addition some patients have specific preferences or needs regarding medical care, death and dying that are based upon their religious beliefs. The physician often plays an important role in supporting a patient’s exploration of these issues. Taking a spiritual history is one way to support the patient in this exploration.

Taking a Spiritual History

S–spiritual belief system

P–personal spirituality

I–integration with a spiritual community

R–ritualized practices and restrictions

I–implications for medical care

T–terminal events planning

Questions for personal reflection and discussion:

Do you feel comfortable discussing spiritual and religious issues with a patient?
What roles are appropriate for a physician to take in this exploration?
What roles are inappropriate for a physician to take?

References
Maugans TA. The SPIRITual History. Arch Fam Med. 5:11-16, 1997.
Ambuel, B & DE Weissman. Discussing spiritual issues and maintaining hope. In DE Weissman & B Ambuel, Improving End-of-Life Care: A Resource Guide for Physician Education, 2nd Edition. Medical College of Wisconsin, Milwaukee, 1999.
Griffith, JL & ME Griffith. Hope in suffering/pain in health: Talking with patients about spiritual issues. Presented at The Eighteenth Forum for the Behavioral Sciences in Family Medicine, Chicago, Illinois, October, 1997.

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TERMINAL DELIRIUM

Some degree of cognitive function loss occurs in most patients in the week or two before death. This includes withdrawal, lethargy, concentration deficits, change in sleep/wake cycles, paucity of interaction, and episodes of disorientation. The term confusion is not an accurate descriptive term. It can mean anything from delirium, dementia, obtundation to acute psychosis.

The most common causes of delirium are drugs, infections, and worsening medical illness. Delirium near the end of life should be approached in the same way as in other clinical situations: look for reversible causes, minimize harm to the patient, and treat symptoms. Delirium cannot safely be managed over the phone. Go look at the patient.

Key points about terminal delirium: It can be expected very near the end of life (within 1-2 weeks of death). Patients need a focused assessment, including a brief mental status examination. Delirium can be hyperactive and agitated, hypoactive and lethargic, or a combination of the two. The hallmarks of delirium are an acute change in cognitive function, sleep disturbance, incoherent mumbling speech, memory and/or perceptual disturbances. The patient may be paranoid.

The most common identifiable cause of delirium in the hospital is drugs: narcotics, anticholinergics, and sedative-hypnotics, including benzodiazepines such as lorazepam. The drug of choice in terminal care is a major tranquilizer, e.g. haloperidol, given in a dose escalation process similar to treating pain. Haloperidol 1-2 mg PO or IV/IM q2 prn will suffice for most patients. Minor tranquilizers (e.g. lorazepam) can be used for the anxious patient, but paradoxical worsening may occur. Other major tranquilizers include thiothixene (can also be given IM, all others PO) in doses of 1-2 mg q2-4 prn; risperidone 0.5-1 mg bid.

References
Brietbart W, Marotta R, Platt M, et al. A double blind trial of haloperidol, chlorpromazine and lorazepam in the treatment of delirium AM J Psych 1996; 153: 231-237.
Weissman DE, Ambuel B. Improving end-of-life care, a resource guide for physician education.  2nd Edition, pages 48-49, 1999.

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