End of Life Issues

A Discussion of Advanced DirectivesKerri Charles, J.D., M.D.

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99% of people report talking with loved ones about end of life decisions is important to them, but only 27% have done so

80% of people report wanting their physician to be a part of their end of life decisions, but only 7% have discussed it with their doctor

The Legal Beginnings

•First Amendment-Religious basis to withhold treatment ( Jehovah's witness, Christian Scientists). •All 50 states have similar legal definition of “brain death” (irreversible loss of the clinical function of the whole brain) except New York and New Jersey which have exceptions due to the orthodox Jewish community due to their cardiorespiratory standard of death•Quinlan case- 1975- The parents fought to remove mechanical ventilation, the physicians sought to continue. KQ was in vegetative state. Parents rights supported by NJSQ under the “Right to Privacy” . Determined they were adequate “surrogate decision makers” and knew what she would wish. Mechanical Ventilation removed and she survived 10 years on ANH (Artificial Nutrition and Hydration) . The court did recognize physicians had interest in preserving life. They rejected First and Eighth Amendment claims as base.

•Cruzan vs Director, Missouri- First US Supreme Court Case, 1990. Parents fought to have ANH stopped, she was breathing on her own in vegetative state after MVA. Physicians and Governor of Missouri fought parents. Supreme Court ruled in favor of the State, requiring "clear and convincing evidence". Stating while patients and agents have right to refuse treatment, states interest in preserving life prevails. So they can limit this right by requiring a minimal level of proof. Case was returned to state court, new evidence brought to meet standard, her doctor decided not to oppose and State Court sided with parents.•Schiavo- The husband was appointed legal guardian. He was awarded large medical-legal settlement. She remained in vegetative state for 8 years. He petitioned to have her ANH stopped. Her parents argued to continue it. The court ruled on behalf of husband. Parents appealed, ANH stopped and started 2001, 2003. IN 2003, a law passed by Florida House and Senate allowing Governor Bush to have tube reinserted. Then 2004, Florida SC struck down law based on “Separation of Powers.” In 2005, ANH stopped. US Congress and President Bush mandated case be reviewed by Federal Courts and US Supreme Court who supported lower court that ANH be discontinued. She died March 31, 2005.•“From Quinlan to Schiavo: medical, ethical, and legal issues in severe brain injury”. Robert Fine, BUMC Proceedings 2005; 18:303-310.

Do No Harm

• Withdrawal of care and withholding care are equivalent in the eyes of the law. Ex. It may be appropriate in some cases to use trial of therapy to determine response, it is then OK to withdraw.

• What can be withheld?o Artificial hydration, nutrition, respiration, surgery, chemotherapy, CPR,

hemodialysis, antibiotics, transfusions, etc.o What is CPR? Artificial ventilation, chest compressions, delivering electric

shocks to heart, delivering medications to restart heart

• The right of patients to refuse medical therapy can be limited by four countervailing state interests in :

• Preservation of life• Prevention of suicide• Protection of third parties such as children• Preserving the integrity of the medical profession• Emanuel EJ. A review of the ethical and legal aspects of terminating medical care. Am J M

ed 1988; 84:291

Who can refuse?

• What is capacity? • To determine capacity does not require a legal determination or a

psychiatric evaluation• It does not necessarily equal legal competence• One can have capacity to make some decisions and not others• Competency- is a legal determination. Necessary for making

decisions beyond health care determinations such as financial and legal matters.

When to question capacity?

o An abrupt mental status changeo Irrational refusal of care, or refusal inconsistent with patients prior

stated beliefso When patients have a known risk factor for impaired decision making:

o Psychiatric Illnesso Educational Barrierso Cultural or Language barrierso Age extremes

Questions to ask?

• Ask the patient: What is your understanding of your health condition?

• What do you understand are your choices for treatment and the odds of it working?

• What risks are seen with this treatment?

• What will happen if you do nothing?

• What factors are influencing your decision?

• Do you trust your doctors and nurses?

• Have you made a choice and what you decided? Tunzi, “Can the Patient Decide” Am Fam Physician. 2001 Jul 15;64(2):299-308

How do they refuse? Informed Consent

• Reasonable person, specific patient-what would this patient need in order to be participant in decision making process

• Nature of procedure-reasonable physician- what would a reasonable one say about this intervention

• Risks –common and severe

• Benefits

• Alternatives

• Capacity, Voluntary- it is easy for a patient or agent to feel coerced in emergency, may consent to things they don't understand won't change terminal illness or PVS

• Documentation

Having an advanced directive does not change your ability to make treatment decisions. You can change your mind about your care at any time regardless of what is written in directive if you are capable of doing such.

Federal law requires that you must be provided information on advanced directives anytime you are admitted to a facility that receives federal funds, and they must transfer you if they are not able to honor your advanced directive.

Planning the End of Life Discussion

• Be familiar with your state laws and hospital policies• Choose an appropriate setting and time for discussion• Ask your family what they understand about your values and

goals for care• Discuss specific treatment preferences• Establish and implement plan

Emanuell LL, Von Gunten CJ, Ferris FD. EPEC Project, The Robert Wood Foundation, 1999.

Emotional Pitfalls

• Avoid terminology such as “doing everything” or “nothing”• Realize that family’s commonly believe food and water providing comfort

and that this “their role” to provide• Understand Cultural differences and avoid assuming families, friends,

and physicians know what you would want

Advanced Directives

• Medical durable power of attorney for health care- no legal requirement that this be done, next of kin can serve, can be executed without attorney

• Living will- takes effect when a patient is incapacitated, can modify to include specific interventions and treatments

• CPR Directive- this is an Advanced Directive expressing ones wishes to withhold CPR

• Combined directive- ex. The Five Wishes• Do not resuscitate (DNR) – It is a physician order not to

perform CPR. Expires upon leaving facility.• M.O.S.T.- Medical Orders Scope of Treatment- Not a living

will. They are orders expressly written by patient’s treating physician. The orders are written by a physician directed by patient's wishes

Medical POA

A Medical POA only is entitled to make medical decisions.They cannot make decisions about finances, personal property, or real estate ( this is a general Durable POA)The medical POA has all powers you do-can review medical records, make decisions for you, and make placement decisions.They cannot revoke living wills, CPR directives or MOSTs, unless expressly given authority.

• Colorado defines "Authorized agent" as court appointed guardian, an agent appointed by power of attorney, or a selected proxy (proxy selected during specific healthcare crisis and duty expires when when patients regains ability)

• In Colorado, no one is given automatic authority to make decisions for another adult, and healthcare providers cannot simply make decisions for patients except in an emergency. A proxy decision maker may be chosen from group of interested persons if no POA has been chosen.

Living Will

The living will directs doctors to stop or withhold treatment in certain circumstances.

It goes into effect 48 hours after two doctors certify you are terminal or in a PVS

You can also direct artificial nutrition and hydration wishes in Colorado .

Must have two competent adult witnesses sign. ( can't be your MD, their employee, a creditor, an heir)

Colorado CPR Directive

• The Colorado CPR directive must be signed by both the individual (agent or “proxy”) and his/her physician.

• It is an advanced directive that is valid outside of healthcare facilities and guides EMs and other first responders so it should be kept in visible place or jewelry should be worn to notify providers of its existence. It will not effect other care like pain, bleeding, infectious treatment, ect. Only CPR.

M.O.S.T.

• MOST: Medical Orders Scope of Treatment- Not a living will. They are orders expressly written by patient’s treating physician. The orders are written by a physician directed by patient's wishes. Usually for patients who see healthcare providers often or are in a facility. When a treating physician is provided a MOST they can:

• follow the orders as written, or

• obtain consent from patient or authorized decision maker to change the orders, or

• promptly and safely transfer the patient to a provider who will follow the orders.

DNR Orders

• A CPR directive is not the same as a DNR order. A DNR order is a doctor’s order made for severely ill patients in healthcare facilities, such as hospitals, long term rehabs, and nursing homes. It expires when the patient leaves the facility. DNR orders are only applicable while in a facility and are specific for each facility stay. Advance directives do not have to include a DNR order, and you don't have to have an advance directive to have a DNR order.

Colorado Specifics

• Colorado Medical Treatment Decision Act, May 2010. Requires attending physician and one other physician to “declare” patient to be in “terminal condition or persistent vegetative state” . The living will requires two witness signatures. They cannot be your healthcare providers, an employee of your healthcare provider, your creditors, or anyone likely to inherit property from you. The Med POA does not require witness, other states do requireA notary’s signature and seal is a good idea but not required.

• Colorado law prohibits life insurance companies from considering the withholding of care suicide when making policy determinations.

• Insurance carriers and Medicaid required to provide hospice care at 9 months as opposed to 6 months.

• Created a living will registry

To relieve suffering

Three principles should be followed in providing pain control at the end of life. 1.Pain can be controlled in most patients by following the World Health

Organization's step-care approach.2.Acute or escalating pain is a medical emergency that requires prompt attention.

A delay in responding to this pain makes it more difficult to control. 3.Addiction is not an issue in patients with a terminal illness. When pain is treated

appropriately, addiction problems are rare.6 “Challenges in Pain Management at the End of Life”; Miller, Miller, Jolley, AFP ; October 1, 2001.

Free resources for patients

• http://theconversationproject.org/starter-kit/intro

• http://www.practicalbioethics.org/index.html

• http://www.coloradoadvancedirectives.com

• Can order copies of advanced directive booklets by calling Colorado Hospital Association , 720-489-1630