END OF LIFE ISSUES

BOUVIA

Elizabeth Bouvia (born c. 1958)

BOUVIA

On September 3, 1983, Bouvia, at the age of 26, admitted herself into the psychiatric ward of Riverside General Hospital in Riverside, California. She was almost totally paralysed by cerebral palsy and had severe degenerative arthritis, which caused her great pain.

Bouvia was alienated from her family and husband, and had been entertaining thoughts of suicide. She requested hospital authorities to allow her to starve to death. When they refused and ordered her to be force-fed, Bouvia contacted the American Civil Liberties Union, which assigned her a lawyer. In the subsequent lawsuit, the court upheld the hospital's decision and ordered force-feeding to continue.

Following the court case, a bitter dispute broke out among physicians regarding the Bouvia case. Bouvia tried to resist the force-feeding by biting through the feeding tube. Four attendants would then hold her down while the tubing was inserted into her nose and liquids pumped into her stomach.

Some physicians called this battery and torture while others claimed that the hospital was right to err on the side of continued life

Bouvia appealed the lower court ruling and lost. Now, in addition to the force-feeding, she was hooked up to a morphine drip to ease the pain of her arthritis. Eventually, she appealed again and this time the court ruled in her favour that the force-feeding constituted battery.

After the court case, Bouvia decided that she would live. In 1998, she appeared on 60 Minutes, saying that she was still in pain and had felt great pressure to continue living; she expressed the hope that she would soon die of natural causes. She was still living in 2005.

WHAT IS YOUR DEFINITION OF DEATH

What happens when you die? Is death a painful experience? Do you believe in an existence beyond

death?

UNIFORM DETERMINATION OF DEATH ACT (UDDA)

This is a draft state law that was approved for the United States (US) in 1981 by the National Conference of Commissioners on Uniform State Laws, in cooperation with the American Medical Association, the American Bar Association, and the President's Commission on Medical Ethics.

The act has since been adopted by most US states and is intended "to provide a comprehensive and medically sound basis for determining death in all situations"

DETERMINATION OF DEATH.

An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead.

A determination of death must be made in accordance with accepted medical standards.

BRAIN DEATH

Brain death is the irreversible end of all brain activity (including involuntary activity necessary to sustain life) due to total necrosis of the cerebral neurons following loss of brain oxygenation. It should not be confused with a persistent vegetative state.

Harvard Medical School published a pivotal 1968 report to define irreversible coma

KAREN ANN QUINLAN

1976 Karen Ann Quinlan controversy, state legislatures moved to accept brain death as an acceptable indication of death.

Organ Donors need to be dead before their organs are harvested so there is a push to get a definition of this

"BRAIN DEATH"

Today, both the legal and medical communities in the US use "brain death" as a legal definition of death, allowing a person to be declared legally dead even if life support equipment keeps the body's metabolic processes working.

BRAIN DEAD IS…..

A brain-dead individual has no clinical evidence of brain function upon physical examination. This includes no response to pain and no cranial nerve reflexes.

Reflexes include pupillary response (fixed pupils), oculocephalic reflex, corneal reflex, no response to the caloric reflex test and no spontaneous respirations.

MEDICAL DEFINITION

An EEG will therefore be flat, though this is sometimes also observed during deep anaesthesia or cardiac arrest.

Although in the United States a flat EEG test is not required to certify death, it is considered to have confirmatory value

Medical science argues that a permanent cessation of electrical activity indicates the end of consciousness

NEEDS TO BE RIGOROUS!! Certain that the condition is irreversible. Legal criteria vary, but in general in the USA they

require neurological examinations by two independent physicians.

The exams must show complete absence of brain function and may include two isoelectric (flat-line) EEGs 24 hours apart

(less in other countries where it is accepted that if the cause of the dysfunction is a clear physical trauma there is no need to wait that long to establish irreversibility).

The patient should have a normal temperature and be free of drugs that can suppress brain activity if the diagnosis is to be made on EEG criteria.

OR…..

Alternatively, a radionuclide cerebral blood flow scan that shows complete absence of intracranial blood flow can be used to confirm the diagnosis without performing EEGs.

ORGAN TRANSPLANTATION/DONATION

Most organ donation for organ transplantation is done in the setting of brain death

This may result in legal death, but still with the heart beating, and with mechanical ventilation all other vital organs may be kept completely alive and functional, providing optimal opportunities for organ transplantation

PVS ("PERSISTENT VEGETATIVE STATE")

A wakeful unconscious state that lasts longer than a few weeks is referred to as a persistent vegetative state

Is not recognized by statute as death in any legal system

Courts have required petitions before termination of life support that demonstrate that any recovery of cognitive functions above a vegetative state is assessed as impossible by authoritative medical opinion

CONTROVERSY IS THAT….

Should those in PVS should be allowed to die Or if recovery is at all possible, care should

continue

PVS

This legal and ethical issue raises questions about:

autonomy quality of life appropriate use of resources the wishes of family members and professional responsibilities

COMA VS VEGETATIVE STATE

Most PVS patients are unresponsive to external stimuli and their conditions are associated with different levels of consciousness.

Some level of consciousness means a person can still respond, in varying degrees, to stimulation.

A person in a coma, however, cannot.

COMA VS PVS

PVS patients often open their eyes in response to feeding, which has to be done by others; they are capable of swallowing, whereas patients in a coma subsist with their eyes closed

OTHER CHARACTERISTICS

Individuals in PVS are seldom on any life-sustaining equipment other than a feeding tube because the brainstem, the center of vegetative functions (such as heart rate and rhythm, respiration, and gastrointestinal activity) is relatively intact

Eyes: relatively fixed position track moving objects move in a disconjugate manner

OTHER CHARACTERISTICS

may experience sleep-wake cycles state of chronic wakefulness grinding their teeth swallowing smiling shedding tears grunting moaning screaming Without apparent reason or stimulus

DIAGNOSIS OF PVS

Difficult at best Misdiagnosis of PVS is not uncommon Functional neuroimaging in the identification

of residual cognitive function in persistent vegetative state; PET SCAN FMRI

This technology is providing new insights into cerebral activity in patients with severe brain damage

Such studies, when successful, may be particularly useful where there is concern about the accuracy of the diagnosis and the possibility that residual cognitive function has remained undetected

ETHICS

Dialysis CPR Are these futile treatments in these

patients……

CASES ABOUT END OF LIFE Mrs. Doe is conserved because of her severe dementia and

has been a nursing home patient on Medi-Cal for more than five years.

She has no family and left no written instructions about her health care wishes.

In the past two years, she has become unable to walk or to follow any simple commands. She has not spoken in months.

During the past year, she has required spoon-feeding, and she has been taking progressively longer to eat each meal. Because of episodes of coughing and possibly choking, her diet has been changed to puree with thick liquids. She still seems to prefer some foods, and the staff can tell you which foods she will usually spit out.

She has been hospitalized twice for pneumonia in the past year but has recovered without needing ICU treatment.

One Saturday evening, Mrs. Doe is congested. She begins running a fever, and her breathing

seems labored. The nursing home staff calls 911 and sends the

patient to the hospital. The emergency room physician consults with the

internist and the pulmonologist, and the patient goes to the intensive care unit.

She is intubated and put on a ventilator. After two days of antibiotics and vigorous suctioning, she seems to be breathing better, but she has required restraints to keep her from pulling out the breathing tube and sedatives so she does not try to hit the ICU staff.

You come to see Mrs. Doe in the ICU on Monday afternoon. On your way to see her, you get a message that the nursing home has just called you to see if Mrs. Doe will have a feeding tube placed while she is in the hospital. They point out that she has been losing weight and takes so long to eat a meal that it is impacting the staff's ability to get other jobs done.

When you arrive in the ICU, the patient is still on the ventilator, and each wrist has a binder that secures her to the bed frame. Although she is somewhat sedated, she seems uncomfortable, and there is still an aura of panic that penetrates her drug haze.

QUESTIONS FOR YOU……. The ICU physician is glad to see you because he

has lots of questions about what happens next with the patient.

Is she is "full code"? Should they "do everything"? - i.e., should she be

resuscitated if she suffers a cardiac arrest? Do you give permission for them to continue to

restrain her arms so that she does not pull out the tubes?

Can the nursing home do IV antibiotics? Will the nursing home accept her back if she

overstays her seven-day bed hold? Will she be transferred back to the hospital again

for her next bout of pneumonia?

WHAT REALLY HAPPENS……

"There are an estimated 4,000 deaths each day where there's a conscious decision to limit treatment in some way," said Dr. Ron Cranford, professor of neurology at the University of Minnesota in Minneapolis.

"We have an estimated 14,000 to 35,000 adults and kids in a persistent vegetative state every year," he said. "It's a routine thing to discontinue treatment. These decisions are made behind the scenes."

Other estimates place the number of adult patients in PVS in the United States between 15,000 and 25,000. The annual cost of caring for these patients is estimated to be as high as $7 billion

MRS. GILL

Mrs. G is a 84 year old woman with a history of insulin-dependent diabetes mellitus and coronary artery disease who presents to the ER with a 2 day history of severe pain in her right calf and foot. Prior to this she would get a cramping in her right calf when she walked 1-2 blocks, relieved with rest. She is writhing in pain when she comes in.

PAIN HISTORY?

No swelling, no redness, but rt. foot pale and cold

throbbing achefrom rt knee down all the way around leg10 on a 0 to 10 scaleconstant for last 2 days

FURTHER HISTORY?

PMH: Diabetic for 5 yrs, NPH insulin shot 20u just

at bedtime; blood sugars staying in the 100s; regular check-ups every 3 mos fine including eye exam

Small MI 5 yrs ago, needing 3 vessel CABG, recovered well and did cardiac rehab for 6mos after.

ROS: No fevers, appetite good, no weight loss No chest pain, no shortness of breath No skin breakdowns, no areas of

inflammation No numbness, no weakness, no back pain

PHYSICAL EXAM Severe distress, cannot keep still VS: afeb, HR – 124, BP 186/96, RR – 22 Lungs clear to ausculation CV: Nml S1S2, 1/6 SEM LUSB, no JVD, carotids

nml, pulses 2+ except no pulses palpable in Rt foot or Rt popliteal, Rt femoral pulse nml

Abd: soft, non-tender, no HSM, no pulsatile masses

Extr: Rt foot pale and cool to touch, no edema, joints all nml

Neuro: non-focal

WHAT ARE YOU THOUGHTS OF WHAT IS CAUSING THIS PAIN?Differential:* Acute ischemic limb pain

WHAT TESTS WOULD YOU GET AND WHY? Basic metabolic panel mainly for renal

function: BUN 42, creatinine 4.2 Muscle enzyme tests for degeneration:

CPK – 4400, Myoglobin – too high Arterial blood flow tests – show

occlusion in the femoral artery on rt, no popliteal, dorsalis pedis, or post tib wave forms

Angiogram – acute occlusion of rt common femoral artery

WHAT TREATMENT OPTIONS?

Anti-coagulation – IV heparin started Embolectomy – attempted emergently but

failed Surgical by-pass/amputation

MRS. GILL IN CHARGE?

The vascular surgeons feel surgery is the only option. In fact her renal function is rapidly deteriorating, and unless she gets an emergent amputation, she will likely die in 1-2 weeks. In fact, they bluntly told Mrs. Gill this and she adamantly refused, greatly upsetting the surgeons who immediately want a psych consult.

HOW DO YOU DECIDE MRS. GILL IS CAPABLE OF MAKING THIS DECISION?

Does she understand what is the nature of her problem and the decision at hand?

Does she know the options available and the consequences of each option, along with the risks?

Is she able to rationally give you reasons for her decision?

Does this decision-making ability wax and wane, change over time?

Do close family members concur with her abilities?

IS THAT YOUR FINAL ANSWER?

On talking with Mrs. Gill, she does realize she will die without an amputation, but cannot give reasons why she does not want it, saying that God works miracles all the time and there must be other ways because she does not trust the surgeons. Her mental status does fluctuate during the day.

Her only close relative is a daughter who was present at this discussion. The daughter states that her mom has become increasingly confused over the last few months and that she feels her mom is not capable of this decision. She never filled out advanced directives.

You all agree Mrs. Gill is not able to make this decision.

WHO’S DECISION IS IT NOW? State of Illinois has a Health Care Surrogate

Act which goes through a chain of command of who can make the decisions – from power of attorney, to spouse, to children, to parents, to siblings… to friend. If no one is available, it needs to go through the courts for a court-appointed guardian.

REMEMBER – this surrogate decision-maker needs to base this decision on what they believe the patient would actually want if they themselves could choose.

DAUGHTER’S DECISION

Based on what the daughter knows about her mom, the fact that her mom never wanted to undergo any other surgeries after her by-pass and that her mom just wants to be able to stay at home comfortably, the daughter agrees to not have her mom go through the surgery.

YOUR PERSONAL BELIEFS LEAD YOU TO FEEL THIS IS A WRONG DECISION

How can you effectively and ethically respond to this discrepancy in beliefs?

Realize whose decision it is Realize your limitations Communicate in a way not to coerce Responding in this way will help you personally in

tough decisions for the future so you will not have guilt, anger

If to hard, recommend other physicians

SO THERE’S NOTHING MORE WE CAN DO FOR MRS. GILL? NEVER nothing more we can do – focus just

shifts on palliation Define her goals; discuss advanced

directives if you can. Discuss options to keep her comfortable,

especially hospice care at home

MRS. GILL’S COURSE:

For the first 2 days in the hospital, Mrs. Gill needed to take 2mg of IVP morphine every 1-2 hrs, about 20 doses in a day, to stay comfortable, getting her pain down to a 2 on the pain scale, where she wanted it.

At first she was drowsy, but gradually woke up, wanting to go home. Home hospice was agreed upon, though she wanted the IVs stopped. She had no nausea or other side effects.

MRS. GILL’S COURSE

She got home the next day, pain very well controlled, with home hospice. She had moments of lucidity where she was able to resolve issues with daughter and say good-byes.

She needed a hospital bed and commode, along with nursing aide visits daily to help the daughter care for her at home.

She gradually slipped off into a coma and died peacefully within 1 week of discharge. The daughter, though sad, was very grateful in how her mother passed away. The hospice bereavement team is following the daughter.