Approaches to Issues of Futility

Bernard W. Freedman, JD, MPHbwfreedman@netscape.net

E. M. Cioran

…once pain rouses us, there is no one but ourselves, alone with our disease, with the thousand thoughts it provokes in us and against us.

California Probate Code 4650

An adult patient has the fundamental right to have life-sustaining treatment withheld or withdrawn. The prolongation of the process of dying for a person for whom continued health care does not improve the prognosis for recovery may: Violate patient dignity, and

Cause unnecessary pain and suffering, While providing nothing medically necessary or

beneficial

Problems with determination of futility are often caused by physicians

Institute of Medicine study on improving care at the end of life

1.There is overuse of care;2. Inconsistent with patient preferences and

prognosis;3. Underuse of care to treat symptoms;4. Untimely referral to hospice;5. Poor palliative care;6. Poor communication regarding prognosis and treatment preferences.

Annals of Internal Medicine (2001) 135:8.

Physicians are obligated to initiate patient dialogue

Give patient the greatest opportunity to make his or her own choices –

Communicate with the patient while you can - before loss of capacity.

Physicians Don’t Generally Discuss End of Life Decisions

In a prospective cohort study in five tertiary medical centers found that: <23% physicians discussed CPR

performance with seriously ill patients(n1589)

Annals of Internal Medicine: (1997) 127:1; 1-12

Prolonged Ventilation

12% discussed preferences with their physicians 20% said that they wanted it

80% said that they did not want it. (n 1573)

Annals of Internal Medicine 1 July 1997 | Volume 127 Issue 1 | Pages 1-12

Effective vs. ExcessiveBenefit of Treatment vs. Burden on Patient

Are we keeping the patient alive when there is no benefit to life of the patient?

Are we giving the patient time to recover to a level of quality of life that the patient will accept,

Or are we merely prolonging or exacerbating the process of death?

What does the patient/surrogate need to understand when considering futility

Diagnosis, prognosis Burdens of Illness Effectiveness of Treatment Potential of rehabilitation, and Diminished quality of life. Right to refuse treatment, and Right to request palliative care/comfort care

Faith and Dignity Fiduciary: from Latin - fides, meaning faith

A fiduciary is expected to act with the highest level of good faith, loyalty and trust.

The surrogate is not your patient.When a patient looses capacity to make decisions, he or she does

not loose the right to effectuate his or her choice. There is no fiduciary relationship or duty to the surrogate. The fiduciary relationship with your patient continues, The Surrogate must be solely used as a conduit for the

wishes and choices of the patient. Therefore the surrogate must receive the same type and

amount of information the patient would receive if able to make decisions.

Dealing with Surrogate Decision Makers

Surrogates are agents. They must effectuate the wishes of the patient - not their own wishes.

To do so they must understand the illness, its effect on the patient, and the prognosis.

If they won’t listen and /or will not act, they cannot be a surrogate.

California Probate Code §4714

A surrogate shall make a health care decision in accordance with the patient'sindividual health care instructions, if any, and other wishes to theextent known to the surrogate.

Otherwise, the surrogate shall make the decision in accordance with the surrogate's determination of the patient's best interest.

In determining the patient's best interest, the surrogate shall consider the patient's personal values to the extent known to the surrogate.

  

Surrogates and the Therapeutic Privilege

Physicians may decide that telling a patient the truth about their illness is not in the patient’s best interest.

This does not, however, apply to a surrogate decision maker.

If a surrogate cannot fully and intelligently participate, then he or she cannot be the surrogate. Then a second surrogate must be identified, if possible. If not turn to a best interest standard.

Significant Delay must not be permitted to impact on pt’s best interests

A surrogate cannot be permitted to cause a delay in decision making which will harm the patient.

If a surrogate cannot or will not be fully informed and understand the diagnosis and prognosis, he or she may not continue as surrogate – because they are not speaking for the patient.

If a surrogate cannot or will not decide – find a new surrogate

California Probate Code 4714

A surrogate, shall make a health care decision in accordance with the patient's individual health care instructions, if any, and other wishes to the extent known to the surrogate. Otherwise, the surrogate shall make the decision in accordance with the surrogate's determination of the patient's best interest.

In determining the patient's best interest, the surrogate shall consider the patient's personal values to the extent known to the surrogate.

Statutory Right of the Physician regarding the Determination of Futility

A health care provider or health care institution may decline to comply with an individual health care instruction or health care decision that requires medically ineffective health care or health care contrary to generally accepted health care standards applicable to the health care provider or institution.

California Probate Code § 4735

California Probate Code §4766A petition may be filed under this part for…

(c) Determining whether the acts or proposed acts of an agent or surrogate are consistent with the patient's desires as expressed in an advance health care directive or otherwise made known to the court or, where the patient's desires are unknown or unclear, whether the acts or proposed acts of the agent or surrogate are in the patient's best interest.

  (d) Declaring that the authority of an agent or surrogate is terminated, upon a

determination by the court that …(1) The agent or surrogate has failed to perform, or is unfit to perform, the duty under an advance health … [or] , is acting (by action or inaction) in a manner that is clearly contrary to the patient's best interest.

 

Disqualification of a Surrogate A patient having capacity may disqualify, at anytime,

another person, including a member of the patient’s family, from acting as the patient’s surrogate by a signed writing, or by personally informing the supervising healthcare provider of the disqualification. (California Probate Code Section 4715).

Such disqualification should be promptly recorded in the patient’s healthcare record, noting the date and time of such declaration.

Technology can Mask Futility

Physicians may tend to overuse technologically aggressive, life-prolonging treatments and, underuse communication skills that can assist patients in making choices.

Miettinen T, Tilvis RS. Medical futility as a cause of suffering of dying patients: the family members’ perspective. J Palliat Care. 1999;15:26-29

Do not mask futility with medicine Things look better today, his

white count has come down somewhat…

We think we can wean him tomorrow - if not, we can trach him…

He is still fighting this infection, we don’t know yet if he will be able to overcome it…

If we cannot wean him we should talk about whether he would want to have a tracheostomy and go to a long term nursing facility, or refuse further treatment.

Don’t frighten the patient or surrogate with the word “futility.”

If we wait until the therapeutic impasse to tell the patient or surrogate we create panic rather than understanding –

We risk loosing our ability to reason and discuss; This leads to protest, denial and anger with the medical

treatment which you have been providing; It hurts the patient It sets the stage for consideration of claims of malpractice.

Discussing futility is made more difficult by:

Overly Optimistic or pessimistic prognoses Lack of or poor communication about treatment Failure to know the patient’s values, expectations,

and cultural and religious orientation.

G. Holloway, R. et al. JAMA 2005;294:725-733.

Elicit patient’s valued life activities to help evaluate QOL

Time with family and friends, autonomy, recreation, other

Probe positions on "life worth living" and states considered "worse than death"

Include spiritual and ethical dimensions of these values

Time-Limited trials

Gives surrogate opportunity and time to participate and gain a better understand of the benefits and burdens of treatment;

To allow families to work through grief and intelligently participate in evaluating treatment options and the patient’s values and wishes.

All Patients or surrogates must:

Be told their diagnosis and prognosis; Be told what therapy is effective; Told that they have the option to Refuse

Treatment;

Risks of Demanding Futile Treatment Must be Disclosed Just as informed consent is required for the

refusal of treatment, it is also required for the demand of futile treatment: the patient /surrogate must be told of: Unnecessary Suffering Unnecessary Prolongation of Imminent Death Needless anguish, fear and insecurity for loved

ones

Acceptable Criteria I don’t want to live in a SNF on machines –

So, I am refusing treatment. I understand that I will die without this treatment.

I want everything done and let the Lord decide when it’s my time.

Unacceptable CriteriaPatients: My family wants my life insurance benefits. I want to refuse treatment and die, but my children

want me to fight on, even though you have told me that further treatment is futile.

Surrogates:I know she is suffering needlessly but I don’t want to feel I am killing her…Her sister does not want me to …

Jose Ortega y Gasset

Law is born from despair of human nature.

The Law Generally, Courts do not want to see you

unless there is a dispute. Courts adjudicate disputes – they do not like

to make medical decisions.

California Probate Code 4765

4765. …a petition may be filed by (a) The patient (b) The patient's spouse, unless legally separated. (c) A relative of the patient (d) The patient's agent or surrogate (e) The conservator of the person of the patient (f) The court investigator, … (g) The public guardian (h) The Primary treating physician or hospital caring for the patient (i) Any other interested person or friend of the patient.

Judicial Powers:California Probate Code §3208 …

… the court may make an order authorizing withholding or withdrawing artificial nutrition and hydration and all other forms of healthcare where the recommended healthcare is in accordance with the patient’s best interest, taking into consideration the patient’s personal values to the extent known to the petitioner.

The Law for Withholding Life Sustaining Treatment Terminal Non Terminal

PVSYes YesYes CCE of

Pt’s Intent

MinimallyConscious

Transparency Issues of futility address the most serious and fundamental

rights; In cases where a patient has no surrogate, it is advisable to

have the Ethics Committee at your hospital review the case and support your decision. Note in your progress record your meeting with, and recommendations of the Ethics Committee.

Discussions with patients and families regarding, DNR orders; transfer to hospice; withdrawal or withholding of treatment, must be noted with specificity, and if possible, before a witness.

Seeking Review and Recommendations of Ethics Committees

Protects the patient; Protects and supports the Primary Treating

Physician’s decision; Assists the Court, if it’s assistance is sought

The ethics of terminal care

Dignity varies with different stages of life. For the terminally ill, dignity is best reflected in our level of respect for a person’s right to choose and in the provision of truly humane and personal care.