Autonomy and Abandonment - Legal and Moral Implications

Advance Health Directive:

Patient has an advanced health directive, witnessed, notarized and in the format of a legal document done by his attorney, rejecting treatment if he has a terminal condition with the probability of death within a few months; and/or an irreversible condition requiring artificial life support. Patient’s daughter is designated as surrogate. The document is notarized.
This 84 year old man is admitted for pneumonia; dementia; depression; anemia; malnutrition; renal failure, and hypernaturemia.

History: Dysphasia, anorexia, ataxia, poor intake, altered level of consciousness, restless, hypotensive, shortness of breath, bilateral rales. He is unable to give any history himself.

Admitting: Diagnosis: Acute pneumonia on top of interstitial lung disease and bronchiectasis.
The patient is intubated and noted to have renal failure, thrombocytopenia, leukocytosis, anemia, and deteriorating mental condition.

Patient’s daughter advises that her father never wanted to be maintained on artificial life support. Options are discussed with daughter, who requests that a do not resuscitate order be instituted.
Daughter advises bioethics consultant that she is waiting to hear from doctors regarding their opinion as to whether or not the pulmonary condition is irreversible, as described in the advance health directive. If so she wants to refuse continued artificial ventilation. Pending the receipt of that information she requests that no tracheostomy be performed. She insists that the patient not be sent to a skilled nursing facility.

Nevertheless, it is recommended, and the daughter consents to a tracheostomy. Daughter has not, however, been told any opinion as to irreversibility of respiratory failure. Attempt at weaning is ordered and patient is extubated. He deteriorates and is reintubated the same day. Pulmonologist, without consulting patient's daughter, writes order that patient be transferred to a skilled nursing facility.

Daughter is advised by nurse about the transfer order and refuses transfer. She reiterates that her father would not want to live in a skilled nursing facility on artificial life support. Under these circumstances he would reject continued artificial ventilation. Daughter says she does not want futile care. Patient’s daughter, and bioethics consult request a meeting with pulmonologist. There is no response from pulmonologist, one-way or the other.

The pulmonologist ceases to participate in case without any discussion with daughter. Daughter requests and signs withdrawal of artificial ventilation form. Three days later the daughter is notified that her father has been extubated and transferred to a skilled nursing facility. She, however, is unable to locate her father at that facility and is told that her father "never arrived." She calls the hospital and is told that he is no longer a patient at that hospital. She thereafter discovers, through the nursing administration office, that her father has died and that his body has been in the hospital's morgue for 3 days.

Comments:

1.    Physicians as well as patients and family often have difficulty withdrawing life-sustaining treatment. The daughter never received an answer as to the probability of death or of the irreversibility of the patient’s condition - the criteria set forth in the advance health directive. Her decisions were not informed.She felt abandoned by the pulmonologist who seemed to "just disappear."


2.    There is no obligation for a physician to treat a patient in a way that is contrary to the physician’s conscience. A physician does have the obligation, however, to inform a patient, or if necessary a surrogate decision maker, as to the diagnosis and prognosis, including risks of treatment and of non treatment. Before signing off the case the pulmonologist, should have and easily could have advised the daughter that he was withdrawing from the case and discuss options, which should have included arranging for a new pulmonologist on the case.


3.    There is reluctance on the part of many physicians to discuss end of life care and options. An Institute of Medicine study on improving care at the end of life found that there is often:
a) Overuse of care that is inconsistent with patient preferences and prognosis;
b) Underuse of care to treat symptoms;
             c) Untimely referral to hospice;
             d) Poor palliative care;
             e) Poor communication regarding prognosis and treatment preferences.

In a cohort study of 1573 patients, prolonged ventilation was not generally discussed:
         12% of patients discussed preferences with their physicians,
         20% said that they wanted it,
         80% said that they did not want it.
Annals of Internal Medicine: 1 July 1997 | Volume 127 Issue 1 | Pages 1-12

4.    After withdrawal or withholding artificial life support, the need for palliative care must be conscientiously provided to patient and/or surrogate decision makers. Responsibility for patient care does not end with a decision to withdraw artificial life support.

5.    Support for family members should continue. This case illustrates that physicians can lose interest in a patient after a decision to withdraw or withhold life-sustaining treatment.  In this instance this may have contributed to the failure to maintain a line of communication with this patient’s daughter, including advising her of her father’s death.


 

Family Dilemmas in End of Life Care - Withdrawal of Artificial Nutrition and Hydration


The patient, Larry M, is a man in his 40s with a wife and three children at his bedside. He is in end stage liver cancer. He has been receiving total parenteral nutrition and IV fluids and has now decided to have his feeding tube and IV fluids withdrawn and to then return home with his wife and children, and with the assistance of hospice, die as comfortably as possible. The patient feels that this is be best for him and helpful to his wife and children to go through this process with him. His physicians fully support this decision.


Before leaving the hospital, however, the patient’s sister flies in from out of state, distraught, angry, and out of control. She cannot accept that her brother is “going to give up.”  She vehemently expresses her disdain for the physicians and for her sister-in-law’s support of her brother’s decision to withdraw artificial nutrition and hydration and leave the hospital.  In the hospital room, sister begins to yell and throw chairs around the room.  The nurse calls security. The patient requests that his sister not be escorted out of the room, and sister agrees to “calm down.”  The sister, however, continues to subject the patient’s wife to verbal abuse. The patient does not want to expose his wife to this abuse, and is concerned that after his death there will be alienation of his wife and children from the rest of the patient’s family.  Accordingly, in order to appease his sister and to protect his wife, the patient agrees to remain in the hospital with continued artificial nutrition and hydration.
The original decision to return home was freely arrived at. His new decision to remain in the hospital is not.  Nevertheless, Larry M has changed his mind based upon factors important to him: namely, his wife and children’s future relations with his family and his sister’s anguish that he, in her eyes, do all he can to survive as long as possible.
It is not the duty of a physician or bioethicist to act as security guards or family councilors.  Bioethicists can mediate the impasse. A bioethicist could privately ask Larry M if he thought it might be helpful if he, and or physician, met with his sister and other family members to discuss the Larry’s terminal medical condition and his right to make unencumbered decisions, and also consider other approaches.


Approaches to consider:
Time is often an important factor. In this instance the patient’s sister has flown in from out of state, probably in a heighten state of panic and fear for her brother. Allowing some time to pass without argument or attempts at persuasion, may allow the sister to cool down to the point of being able to understand the reasons for her brother’s decision.

 
Medicine: Family members living far from the patient have not been a part of the medical care provided or the suffering that patients have endured over the course of their illness.  Apprising them, in some detail, of the long and arduous courses of treatment and make them feel a part of the process and part of the decision making process and enable family members to support the patient wishes and to move from anger and fear for her brother to support and compassion for the patient.
Physicians and nurses may tend to loose interest in patients after withdrawal of aggressive treatment, and may be seen as abandoning the patient. So, physicians and nurses should maintain ongoing and meaningful contact with the patient and family.


In some instances, it has been shown that patients, who would otherwise elect to withdraw from artificial nutrition and hydration, continue to request it in order to satisfy the concerns of family, notwithstanding abdominal discomfort and nausea. Discussions with family and physicians and nurses regarding concerns of withdrawal of artificial nutrition and hydration are generally helpful to the patient and the family.  

 

Genetic Bastards: The Moral Status and Human Worth of Persons Born By In-Vitro Fertilization


The Vatican and the 2004 President’s Council On Bioethics establishes a second class group of persons who they deem less worthy of dignity and respect.

On September 8, 2008, the Vatican issued a new statement on bioethics entitled “Dignitas Personae on certain bioethical questions.”  The Vatican’s paper updates church doctrine regarding the ethics and morality of individuals and the duties and authority of physicians in using in-vitro fertilization (IVF).  The Vatican has always demanded absolute and unconditional recognition of the respect and dignity owed to all persons from the time of conception.  This does not apply to persons conceived by IVF, who from the time of conception are relegated to a lesser class of personhood.

The Vatican identifies people born through IVF as not entitled to the same respect and dignity as owed to persons conceived without the interference of medical technology that requires any extracorporeal processes. The premise of the church is children be conceived “by the fruit of the conjugal act specific to the love between spouses.” If not so conceived, the person “… must be given a moral evaluation in reference to the dignity of the human person.”

In 2004, the President’s Council on Bioethics expressed an analogous point of view.

  The Council states that a child’s “being” is determined by in-utero sexual conception, without which the child is without an “identity.” This, the Council argues, is because the “character and significance of human procreation … all of the child’s being and identity, it owes to a continuous developmental process that begins with the union of egg and sperm and continues through an unbroken sequence of embryonic and fetal stages and active within the womb of the mother.”  The scientific basis for the Council’s position is that:

“… through the genetic recombination produced by the lottery of sexual reproduction, genetic novelty is assured, allowing for the gradual evolutionary emergence of new biological capacities and possibilities.  Humanly speaking, because these deep biological facts are lifted into human self-consciousness, procreation commonly establishes ties of belonging, rooted in begetting ritually significant for parents, children, and the larger society.”

It is these “ties of belonging, rooted in begetting” that the Council argues, that are the genesis of human worth and a basis to gauge the dignity and human rights to be afforded to such a person. So, the child lacks (does not lose), per the Councils reasoning, from the time of conception, an identity. Genetically we could see it as an agenesis of identity and dignity – and as a result, never belonging to the human community.   The distinction, therefore, is that a child born through normal sexual in utero conception is a child that is “created” while the IVF conceived child is “made.”

The concept of personhood has been struggled with for centuries. For Plato, personhood was the essence of the soul. Later, personhood was discussed in terms of Natural Law and the reflection of a truly unique identity, divinely created individual. Thus, the question: are IVF conceived persons, in the eyes of the Vatican, divinely created? If not, we can surmise from the Vatican’s statements that the unconditional respect and dignity enjoyed by all human beings in the eyes of the Church from the time of conception are not applicable to the IVF conceived child.

Under the Doctrine of Faith, the Vatican makes clear that a physician is not permitted to participate in IVF and interfere with the natural sexual procreation:

“… all techniques for heterologous artificial fertilization as well as those techniques of homologous artificial fertilization which substitute for the conjugal act, are to be excluded.  …, the doctor is at the service of persons and the human procreation.  He does not have the authority to dispose of them or to decide their fate.”

So, in order to accommodate the Vatican’s viewpoint, physicians must cease to perform or participate in IVF, and perhaps refuse to discuss the reproductive options available with their patients.  Following this argument further, physicians of would-be parents would have a moral obligation to refrain from using IVF, both for the sake of would-be parents as well as for the overall good of the community. Should physicians shun or care for IVF conceived persons?

It is of great concern that the Council, a pseudo-governmental organization, would stratify the moral and ethical standing of citizens. The Council’s position seeks to supersede procreative liberty and medical decision making with governmental definition of the qualifications to be human. This is antithetical to principles of a democratic society and to the health, welfare and unbiased treatment of persons born with the assistance of IVF.  

It is reported that there are more than 3 million people conceived with IVF. So, what becomes of these persons without a sense of being or identity? How can one be a moral agent in a community where human origins are graded? Are they to view themselves as neutered in someway because of their noncoital beginnings? Should they be reluctant to pass on to their progeny a genetic makeup that has no true identity? Should persons conceived with IVF be seen as lacking ensoulment? The pronouncements of the Vatican and the Council target all persons born with IVF assistance as well as their progeny-forever.  

In-vitro fertilization
Artificial Reproductive Technology
Dignitas Personae On Certain Bioethical Questions
Dignity
Morality
State Paternalism
Religion and medical decision making
Physicians as moral agents