Clinical Bioethics Blog : Bioethicist : Bernard W. Freedman : Medical Consulting, Ethics, End of Life Decisions

 

It is an injustice to cause patients to unnecessarily prolong the process of dying. Actual futile care must be avoided. But it is equally an injustice to easily acquiesce to patient’s demands that my result in unnecessary death.

On August 17, 2010 the Supreme Court of Pennsylvania decided a case involving a non-terminal, profoundly mentally retarded patient. The patient was conscious and non-terminal. David is 53 years old. David's parents were the guardians.

His parents argued that putting him on the ventilator was not in his best interest and requested terminal extubation. The hospital refused. After several weeks his condition improved and he was successfully weaned from the vent.

David was diagnosed as having aspiration pneumonia and was put on a mechanical ventilator. His parents argued that putting him on the ventilator was not in his best interest and requested terminal extubation. The hospital refused. After several weeks his condition improved and he was weaned from the event.

Notwithstanding arguments that this case is moot, the court went ahead and rendered an opinion The Pennsylvania Supreme Court was asked to review the case to clarify the statutory scheme regarding the right of individuals to make their own decisions and to clarify the procedures for decision-making when a patient is incompetent.

The applicable statute required all things “… necessary to preserve life shall be provided to an individual who has neither an end-stage medical condition nor is permanently unconscious”

 An attorney was assigned to David who argued that a Guardian's decision-making abilities should be consistent with the medical recommendations where the life of an  incapacitated person is at stake.

What, we must ask, was the basis for the parent’s demands. What is it that was not in his best interest? It was not their fear that he would be forced to remain on the vent permanently which would cause him anxiety and confusion, because he was responding to treatment for his pneumonia and was weaned off the vent in a few weeks. He would, as presumably they were told, David would return to his normal base line. If this was the case, the reason for withdrawing the vent early would be to end his life notwithstanding his improving condition.

The level of proof required to justify terminal extubation as being in the patient’s best interest is the legal standard of clear and convincing evidence.

The trial court determined that there was no clear and convincing evidence to justify terminal extubation. Although life threatening, aspiration pneumonia is not considered a permanent medical condition.

The hospital argued that life preserving medical care must be provided and, no consent from a third party is required. Nor must any objection by a guardian or surrogate decision maker be honored.

The Supreme Court of Pennsylvania made clear that there is a public policy to preserve life in circumstances of a non-terminal conscious patient.

Moreover, the court noted that in this instance David never had the ability to appoint a surrogate decision-maker in situations where he did not suffer from an end-stage condition or permanent unconsciousness.

We must appreciate that even if the patient is conscious and of normal intellectual abilities that a request to withhold life sustaining treatment in a patient with a non terminal condition, there still must be a showing of clear and convincing evidence that the patient has the capacity to make such a decision.

If the patient’s condition is improving, then before acquiescing to a demand to withdraw or withhold life-sustaining treatment, there must be some due diligence effort by physicians and ethics committees that the patient has capacity, by clear and convincing evidence, to make such a decision.

We should allow some time to pass, have a psychiatric consult; neurologic consult to evaluate any potential underlying injury or insult that might affect the decision-making capacity.

As a patient’s condition improves and the risk of death is diminished the greater the need for a more paternalistic plan of approach when the patient’s or surrogate's demand may result in unnecessary death.

Many patients with mental illness may have capacity to make medical decisions for themselves and many normal cognitively functioning patients may not have capacity. We should not refuse an autonomous decision by a patient, yet we cannot blindly accept a decision by a patient who could return to a reasonable quality of life if treated for a short time.

Physicians must be free to fully evaluate the patient without fear of liability for “refusing” the patient’s demands. As a patient’s condition improves and the risk of death is diminished the greater the need for a more paternalistic plan of approach when the patient’s demand may result in unnecessary death. In this instance the medical record should reflect that the physicians are not refusing the patient’s demands, but first, fully evaluating the patient’s condition before the demands can be accepted. Involvement of bioethics consults and ethics committees will help to protect both the patient from harm and physicians and hospital from claims of liability.

 

• Email This
• Print
• Comments
• Trackbacks
• Share Link

The New Jersey Superior Court–Appellate Division dismissed the appeal in Betancourt v Trinitas finding the appeal moot. The court stressed it's concern over the  “sparse record” presented at the time of  the original hearing in the trial court as well as on appeal and found that the evidence was not “conclusive in several areas necessary to fully adjudicate the substantial issues raised.” This is sometimes referred to as insufficiency of evidence. If the person or entity bringing the case does not provide sufficient evidence the court will dismiss the claim. In this case Tinitas Hospital's request to withdraw the ventilator.

 Ruben Betancourt, 72 years old, was unconscious following the dislodging of a ventilator breathing tube after surgery at Trinitas Medical Center, which resulted in anoxic encephalopathy. He was readmitted to Trinitas in July 2008 with a diagnosis of renal failure. He received dialysis treatments, remained on a ventilator, and feeding tube. The physicians at Trinitas diagnosed Mr. Betancourt as being in a persistent vegetative state and told the family of their intention to stop dialysis and allow him to die.

 “We do not decide the issue but raise it to emphasize why the “thin” and disputed record is so critical to a full analysis.”

The Superior Court in New Jersey (trial court) held a two day hearing and thereafter enjoined the hospital from withdrawing life support without the consent of Betancourt's daughter, Jacqueline, who was appointed his guardian. Mr. Betancourt remained at Trinitas, on the ventilator, receiving dialysis and on a feeding tube until his death in May 2009. The case nevertheless went forward because the attorneys argued that this dilemma is a common occurrence and needs to be clarified by the court.

What this court clarified is that insufficient evidence was presented to consider the issues of withdrawing life-sustaining treatment.  As I pointed out in my previous post: 

            “… the physicians caring for this patient are required to place before the surrogate all medical evidence.

1.        CT and MRI scans,

2.        EEGs,

3.        All respiratory records and any potential to wean him from the ventilator. 

4.        Does he have a tracheostomy?

5.        Are his serious bed sores being tended to or ignored?

6.        What infectious disease is he suffering from?

7.        Is he responding to antibiotics?

8.        To what degree was his brain damaged due to anoxic encephalopathy?

9.        Has the physicians and or hospital discussed the events leading up to the hypoxic event, or hid from it because of concern of liability.

10.      Has all evidence been preserved, provided to the surrogate

11.       Has the ethics committee reviewed the case? If so where is their written report, findings and recommendations?

12.       Have bioethicists and or lawyers participated in conferences with  surrogate?

13.           ETC.

The surrogate cannot perform the job of a surrogate in the dark. This is where detailed records of the conversations and meeting held with the surrogate, family and physicians and reports from the ethics committees are critical to the surrogate’s understanding the issues in order to make a legitimate decision.”

"The uncertainty and lack of true consensus as to Rubin's condition may generate a result that will not only apply to a patient in a non-cognitive, vegetative state, but to a patient who is impaired and in possession of some level of awareness.”

Attorneys representing the hospital chose not to bring necessary evidence. Attorneys pick and choose what evidence they wish to disclose as favorable to their client’s position. We can only surmise that the evidence not produced was not favorable. It is often said that bad facts make bad law. A case of great importance to so many must be decided on clear findings of fact.

“…the judge concluded that Ruben was unconscious and in a persistent vegetative state. As it was not necessary to the decision that he reached, the judge made no specific findings, however, concerning Rubin's ability to perceive pain or react to his surroundings. The uncertainty and lack of true consensus as to Rubin's condition may generate a result that will not only apply to a patient in a non-cognitive, vegetative state, but to a patient who is impaired and in possession of some level of awareness.”

The absence in evidence of the usual procedures when an impasse is reached between physicians and patients is to call for help – from consulting bioethicists and ethics committees who will bring to bear physicians of various specialties, lawyers, lay people and clergy from the community. The surrogate decision maker would then have the benefit of views - and the reasons therefore – to consider facts outside any adversarial proceeding.

There was no indication that this review or participation of the bioethics consultant, or even be ethics committee, was involved in the attempt to resolve the dispute between the patient's surrogate and be patient's physician.

Thus, the attorneys representing the hospital did not give to the trial court sufficient facts to make a decision to the grant the withholding of life-sustaining treatment to Mr. Betancourt. .  As the court said in the opinion in this case: “We do not decide the issue but raise it to emphasize why the “thin” and disputed record is so critical to a full analysis.”

• Email This
• Print
• Comments
• Trackbacks
• Share Link

 Ruben Betancourt, 72 years old, was unconscious following the dislodging of a ventilator breathing tube after surgery at Trinitas Medical Center, which resulted in anoxic encephalopathy. He was readmitted to Trinitas in July 2008 with a diagnosis of renal failure. He received dialysis treatments, remained on a ventilator, and feeding tube. The physicians at Trinitas diagnosed Mr. Betancourt as being in a persistent vegetative state and told the family of their intention to stop dialysis and allow him to die.

The Superior Court in New Jersey held a two day hearing and thereafter enjoined the hospital from withdrawing life support without the consent of Betancourt's daughter, Jacqueline, who was appointed his guardian. Mr. Betancourt remained at Trinitas, on the ventilator, receiving dialysis and on a feeding tube until his death in May 2009. The case nevertheless went forward because the attorneys argued that this dilemma is a common occurrence and needs to be clarified by the court. Oral argument was heard in May 2010. The opinion is pending.

 The Wall Street Journal has followed this case, and The Huffington Post ran a column by Jacob Appel yesterday regarding questions of end of life duties and responsibilities of physicians, patients, surrogates, ethics committees and hospitals. The case is Betancourt v. Trinitas Hospital – and should be decided by the New Jersey Court of Appeals any day now. Mr. Appel casts the issues in this case as an economic problem:

“Are there circumstances in which patient autonomy, as expressed through surrogates, should be overruled in the name of resource allocation and/or sound medical practice? If such rare circumstances ever exist -- and I believe that they do -- then Betancourt v. Trinitas offers an excellent vehicle for the courts to clarify the circumstances under which hospitals may override patients and families.”

Firstly, neither this case nor the appeals court opinion should be used as a ”vehicle” to establish policy. Courts do not make policy; rather they apply and interpret the law. The issues here do not pit life v economics or medical care v rationing of scarce resources. It, rather confronts the proper application of the law – which is quite clear – that the decision rests with the patient. Doctors practice medicine they do not make personal decisions for other people. Nor do courts. The patient’s autonomous decision is a fundamental right that cannot be ignored and should trump other important but not fundamental rights guaranteed by the by the US Constitution.

The appropriate question that should be before the court is whether or not the surrogate decision maker, in this instance Mr. Betancourt’s daughter, was actually carrying out the duties and responsibilities of a surrogate. The job of the surrogate requires that he or she be able to, and actually does, understand the medical issues applicable to the treatment decisions that must be made. Without this understanding and the risks and burdens for the patient, the surrogate does not have the capacity or ability to speak on behalf of the patient.

Similarly, the physicians caring for this patient are required to place before the surrogate all medical evidence.

1.              CT and MRI scans,

2.               EEGs,

3.              All respiratory records and any potential to wean him from the ventilator. 

4.              Does he have a tracheostomy?

5.              Are his serious bed sores being tended to or ignored?

6.              What infectious disease is he suffering from?

7.              Is he responding to antibiotics?

8.              To what degree was his brain damaged due to anoxic encephalopathy?

9.             Has the physicians and or hospital discussed the events leading up to the hypoxic event, or hid from it because of concern of liability.

10.           Has all evidence been preserved, provided to the surrogate and brought before the court

11.           Has the ethics committee reviewed the case? If so where is their written report, findings and recommendations?

12.           Have bioethicists and or lawyers participated in conferences with physicians and the surrogate?

13.           ETC.

The surrogate cannot perform the job of a surrogate in the dark. This is where detailed records of the conversations and meeting held with the surrogate, family and physicians and reports from the ethics committee are critical to the surrogate’s understanding the issues in order to make a legitimate decision.

However, the issue of the adequacy of Ms. Betancourt’s conduct as a surrogate is not an issue brought before the court and will not therefore be decided on that question. The surrogate stated that Mr. Betancourt is a fighter and would want to fight on. But, fight on toward what purpose? The question here is whether this patient would want to continue to receive arguably futile care because of some realistic hope of survival, or to sustain life because of some religious conviction notwithstanding the diagnosis of a persistent vegetative state, or other values. Merely proclaiming that her father would want to “fight on” and keep his body alive under these circumstances is not enough to establish that she has been fully informed – no different from what every patient in this country deserves from their physicians.

Such dilemmas are not uncommon. Indeed they occur thousands of times every day in this country and throughout the world. Yet, the appeals court questioned this point at oral argument. And, unless it is a common question that needs to be clarified, then there is no reason for the court to issue a substantive opinion.

This case needs to be adjudicated on the facts and admissible evidence and not be made in to some cause célèbre or some “vehicle” to push other’s policy agendas.What must be understood by all is that end-of life cases are deeply personal matters requiring both compassion and forthrightness and transparency by all.

• Email This
• Print
• Comments
• Trackbacks
• Share Link

This is the kind of case that courts dread. Baby RM has congenital myasthenic syndrome (CMS) and is on a respirator. The physician supports the mother’s request to terminally extubate. The father implores to the contrary. To make a decision the court must hear evidence, the kind of that will provide a clear picture of this child’s diagnosis and most importantly prognosis - short term and long term.

Before the court can make a ruling this dilemma is best brought before the hospital ethics committee to review this case in detail, hearing from any physicians who are most familiar with this child’s problems, for example, pediatric pulmonology, pediatric neurology and physical therapy who could possibly work with this child – or not. The ethics committee would properly be composed of physicians from a variety of medical specialties, lawyers, lay people and clergy. 

Thereafter, a written explanation and recommendation would be provided. Quality of life at present does not necessarily reflect the probable quality of life in the future. This ethics committee process is designed to confront severe dilemmas in medicine with the experience of having done so numerous times before, should be of great assistance, both to this child’s physician, parents as well as the court - if still necessary.

• Email This
• Print
• Comments
• Trackbacks
• Share Link

A South Korean Ethics Committee uses a staged approach to Withdrawing Life Support

In follow up to this blog’s April 23, 2009 post: “Letting the Conscious But Incompetent, Non Terminally Ill, Patient Die.” A South Korean hospital used a staged approach to consider the withdrawal of artificial life support based upon the condition of the patient.

On June 11, 2009 an Ethics Committee at the Yonsei University Severance Hospital in Seoul Korea decided to remove a 77-year-old woman in a vegetative state from a respirator in accordance with a Supreme Court ruling. 

Severance Hospital President Park Chang-il said:

   

“Though we should comply with the Supreme Court ruling, the patient is not facing impending death. So after conducting several meetings, we made the decision,” … “Under the three-stage guideline for death with dignity we came up with, we will make a prudent decision for patients who are in the second stage like the patient in question.”

Stage 1: patients facing impending death due to irrecoverable diseases such as brain death or impairment of multiple organs.
Stage 2: Patients in a vegetative state on respirators.
Stage 3: Patients able to breathe on their own.

Life support for patients in the first and second stages will be removed when certain criteria are clear such as patient self-determination, family consent and the ethics committee’s conditions are met.

In the light of the case discussed in the April 23 post, ethics committee should be required to pursue, with greater scrutiny depending upon the cognitive level and medical condition of the patient. It is unlikely that the ethics committee in Seoul would have approved of discharging a conscious but incompetent, non-terminally ill patient and resultant death.

Remember: The greater the cognitive and medical condition of a patient, the greater the level of scrutiny that is required before life sustaining treatment can be withheld or withdrawn. The greater the ambiguity the more need there is to err on the side of protecting the patient and to err on the side of life. Such an effort serves to protect the life of the patient and protect physicians and hospitals from potential liability.

 

• Email This
• Print
• Comments
• Trackbacks
• Share Link

I agree with the court’s rulings in the case of Daniel Hauser, highlighted in the media recently. In this case there is as absolute need to continue chemotherapy. It should however be pointed out that the Court ignored Mrs. Hauser’s demand for confidentiality and contributed to this case becoming a spectacle in the media and making Mrs. Hauser the focus of overwhelming media attention, pitting her beliefs against most of the country's. This injudicious conduct may have contributed to the panic of the mother to leave the jurisdiction and hide herself and her son.

The legal issues in this case are, as noted by Arthur Kaplan, from the University of Pennsylvania, on Anderson Cooper's program, are easy. Dr. Kaplan also noted that in many cases psychologists come on board and are generally successful in swaying the family and the minor patient toward recommended treatment. People struggle with medical decisions to withdraw and withhold medical care each day. Many of these dilemmas deal with children. Irrespective of the religious beliefs of the parents this child would nevertheless be required to undergo chemo therapy over the objections of the parents. If the parents were members of the Church of Christ - Christian Science or Catholics, Jews, Muslims, Jehovah's Witnesses - the same legal and ethical issues would have to be confronted.

Patients and their physician, family and friends need to feel free to turn to the court for assistance in controversies surrounding withdrawing and withholding medical care without fear of becoming involved in a media circus.

In this instance the parents adhered to beliefs of a Native American religion.Judge Rodenberg, without any legitimate connection with the legal issues presented, chose to publish his confidential question and answer cross examination of Daniel Hauser, on the court's web site, including inquiry about a Native American religion. This would not have occurred with other more traditionally recognized religions. There is no religious justification to withhold life saving treatment from a minor and the Judge had no legitiamate reason to make it a focus of inquiry.

The Judge ignored Daniel Hauser's right as a minor to confidentiality and this testimony should never have been published.

Daniel Hauser's physicians ignored their bioethical duties to utilize the services of a clinical bioethicist, a psychiatrist or psychologist to intervene and assist in facilitating the exchange of information regarding different treatments and the effectiveness, risk and effect on quality of life of these treatments verses the failing to treat.

If the testimony of Daniel Hauser is accurate, his personal physician never actually sat down with him and established a line of communication  and did not engender a sense of trust.

P 25 of Daniel’s testimony:
Q.  So he [Dr. Bostrom] did not actually tell you, you had cancer?
A.  Right.

Q.  Okay, so you learned of that from your mother?
A.  Right.
…
Q.  So you and Dr. Bostrom never talked to you like I am talking to you right now?
A.  No.

Daniel was able to understand the purpose of his biopsy procedure, the necessity of determining and distinguishing types of cancer, the need for an ultrasound and that ultrasound reflected the possibility of a pulmonary embolism, which could lead to his death.  

Page 39:
Q.  There was a problem with your left arm at some point?
A.  If I moved my arm too much or jerked it, it could break off and go to the heart and I could have a heart attack.

Q.  Did someone tell you that?
A.  Yeah, the nurse did... I think they did an ultrasound or something……… I think (my arm) was warm…they found it was a clot and they said that could cause problems if it broke loose?

So, after one time of chemotherapy he experienced significant illness, weakness, and was caused to fear for his life.  The judge did not directly ask him nor did he indicate any conversation with his physicians in which he was told that his life depended on him receiving continued chemotherapy.

Notwithstanding his age and his inability to legally consent or refuse treatment, a 13-year-old patient should be told, on a level that he can understand, of the ramifications and risks of accepting or refusing therapy.

Medical Confidentiality:

On the issue of the medical confidentiality Daniel was entitled to have his medical care and medical history kept confidential.  Notwithstanding his mother and/or father’s refusal of treatment, Daniel, through his mother demanded confidentiality. Mrs. Hauser specifically asked the judge to maintain confidentiality for her son.  

Page: 60.  Mrs. Hauser asked the court for a private conversation.

Mrs. Hauser’s demand: “I do not want this out of this room, okay?”

Judge Rodenberg responded:

“Well although you need to be mindful… my plan was to file a copy of the [Daniel’s testimony and medical information] … because – just so you are understanding, the public has a [page 61] legitimate interest in knowing what happened here today.”

The public, because of media attention, may be interested in a lot of things, yet, that does not mean that a patient loses his right to keep his medical care confidential. There is no evidence that Daniel Hauser ever put himself into the “public arena” and waived any confidentiality with respect to his personal life and/or medical care. Confidentiality should have been maintained.

If the court views that disclosure of information is necessary, than historically, the full name of the patient is kept confidential and the case is referred to as, for example, In re Daniel H.

For the Supreme Court of the United States, Justice Rehnquist wrote:

It is a hallmark of our juvenile justice system in the United States that virtually from its inception at the end of the last century its proceedings have been conducted outside . . . the public’s full gaze and the youths brought before our juvenile courts have been shielded from publicity. (Smith v. Daily Mail Publishing Co., 443 U.S. 97, 107, 99 S.Ct. 2667, 2671, 61L. Ed. 2d 399 (1979).

In West Virginia for example, in a case involving education records, the state Supreme Court of Appeals recognized the public policy of protecting the confidentiality of juvenile information in all court proceedings:  
    
"we are loathe to allow one of the last bastions of privacy, juvenile confidentiality, to be diminished in the least bit,"

 Unfortunately, normal and customary procedures for dealing with ethical issues in the medical community were not utilized and basic law protecting a child’s right of confidentiality were cast aside.



Bernard W. Freedman, JD, MPH


 

• Email This
• Print
• Comments
• Trackbacks
• Share Link

HEALTH AND SAFETY CODE CHAPTER 166.039.

PROCEDURE WHEN PERSON HAS NOT EXECUTED OR ISSUED A DIRECTIVE AND IS INCOMPETENT OR INCAPABLE OF COMMUNICATION

For the most vulnerable patients, without friends or family, life for some medical patients in Texas, is cheap.  On vague and specious grounds and without proper oversight or transparency, physicians may withdraw life sustaining treatment from a patient, even if the patient is conscious, talking, and aware of his or her surroundings. This statute allows this to occur if a physician treating the patient concludes that the patient will die within six months and there is no advance health directive to the contrary.

There is a fundamental liberty interest which permits a patient to refuse life-sustaining treatment. There is also a fundamental constitutional right, which each person has, to his or her life.  This right is protected by the due process clause. Yet, Texas law makes a presumption that leads to an unjustified decision to withdraw life sustaining treatment. The statute declares that merely because a patient has not filled out or written an advance health directive does not mean they don’t want to die.  So, under Texas law, a conscious, but incompetent patient will be allowed to die if a physician, with “reasonable” medical judgment decodes that the patient will die within six months. “Reasonable” medical judgment is a low standard for the death of a patient. It does not require a "probability of death" with 6 months – only a reasonable and unchecked judgment. Moreover, the available safeguards which would require the review by a hospital ethics committee, or a court of law, is not a hurdle that is required to be cleared before removing the patient from life sustaining care. As long as there is no advanced health directive, and no family or friend to object, a physician can order the cessation of life support, if a non-treating physician or a member of the ethics committee agrees. Nor is there any effort or requirement of due diligence that must be made to locate friends or family.

In looking at this statutory scheme we should keep in mind the words of another Texan:

           "You do not examine legislation in the light of the benefits it will convey if properly administered,but in the light of the wrongs it would do and the harms it would cause if improperly administered."
Lyndon B. Johnson

A conscious competent patient (with a terminal illness) who asks for help to end suffering may not be helped by their physician to end her life. This is considered physician-assisted suicide and is prohibited by law.  However, under Texas law, a conscious patient who cannot decide for him or herself, and therefore needs the utmost protection, can have life-sustaining treatment independently halted by their physician and die without violating the patient’s constitutionally protected right to life. To overcome a fundamental constitutional right a full and comprehensive review of all relevant facts, opinions, motivation, bias, undue influence, is guaranteed by the due process clause of the fourteenth amendment. Why were these safeguards unconstitutionally cast aside by the Texas legislature?

It is clear that the right of a patient to withhold or withdraw from any treatment, including life sustaining treatment, is predicated on a legal tradition protecting the autonomous decision to refuse unwanted medical treatment. However, we must be careful to make the distinction that the right to refuse treatment is the patient’s right, not the right of a physician or hospital, or legislature. A presumption that the patient would choose death rather than life seems to be founded on a legislatively created principle that people, without known friends or family, rights can be disregarded and that the economic interest of the state is sufficient to overcome life. The Texas law that permits a casual and unregulated state imposed medical decision making scheme is unconstitutional.

In most circumstances, there are no specific statistical data on death from a specific disease within six months.  When there are one or more studies, they are based upon information gathered from different medical communities with different demographics . The data will vary based on the age, type, and extent of disease and with different accompanying disease processes.  Nevertheless, this statue presumes that a physician, irrespective of her specialty, is aware of all studies, and that all studies are based on relevant and sound epidemiological principles, and sufficiently powered biostatistical results.

In this way, patients are left to the creative medical imaginations and empirical and anecdotal experience. which will vary between physicians, that will determine a decision of life or death. 

Review by the entire ethics committee, with a written explanation, must be legally mandated. There is, at present, a Bill in the Texas Legislature to amend  this statute, Section 166.039. A requirement for mandatory ethics committee review should be included.

The Texas statute’s 6-month standard is illusory and prone to ethnic, racial, socioeconomic status and age bias. This, more often then not, will be a member of a minority group, whose family and/or friends cannot be located, or the patient is simply alone. So, the statute targets the most vulnerable patients who need the highest level of protection.

• Email This
• Print
• Comments (1)
• Trackbacks
• Share Link

It must not be too easy to withhold life sustaining treatment from any patient. When it comes to a conscious patient, who is not suffering from a terminal illness, we have to be unquestionably sure we know what we are doing.
    
A consulting physician contacted me expressing great concern that a 60 year old female patient who would likely die without surgery was being discharged. He said, “The patient is not terminal and is treatable. She needs surgery to survive – probably amputation of one or both lower extremities. The family wants her to be discharged home for hospice care and be allowed to pass away comfortably. The primary treating physician agrees with the family that this is best for her. This is not right.”

The primary treating physician explained to me that he had been caring for this patient for many years. She has little understanding of her underlying disease.  Her affect is flat.  He thinks that she has complete occlusion of both popliteal arteries, gangrene, and will need an amputation of the left and possible the right leg.  She has well-controlled diabetes; and recurrent VRE infections. She has bilateral pneumonia and bacteremia. She does not have the capacity to make her own medical decisions. The family wants her to be discharged home under hospice care and allowed to die comfortably.

I interviewed the patient and asked if she wanted to go home: she said “yes.” I asked her if she understood that she would most likely need to have an amputation of one or both of her legs if she was to survive. She said, ” if it is needed so I do not die – yes, I want that.”  I asked her questions about her life and family. She answered all questions appropriately, albeit with a slow response and little emotion. Her son, the surrogate decision maker, felt that she would refuse further treatment “if she understood things.”

I urged a psychiatric (was she suffering from a major depressive disorder, negative or positive family experiences, expectations of family vis a vis her illness) and neurologic consult (was she suffering from some transient mental confusion, was any medication she was taking impacting her ability to communicate or consider her options, would waiting help?)  be ordered. A consulting physician asked for an infectious disease consult. (was she suffering from metabolic encephalopathy accounting for her flat affect etc.). Thereafter a bioethics meeting could be arranged to consider all opinions to gain a overall understanding of her cognitive state. Physicians could ask questions of the family and vice versa.

A psychiatrist determined that the patient did not understand the nature and risks of her medical condition and therefore lacked capacity to make any decisions. Accordingly, her request for the surgery could be disregarded.  I discussed with him the fact that she was a non terminal patient who was conscious and responding to questions. He responded that the patient’s son's demands for discharge without further care were “perfectly reasonable and appropriate under the circumstances” as her care would be an incredible burden on the family.

The primary treating physician agreed, explaining that he was overwhelmed with the complex and unrelenting medical problems that this patient had endured. It was clear to me that he cared deeply for this patient and had struggled desperately in treating her over the years.  No further consults were ordered and the patient was summarily released from the hospital within moments of the conclusion of the psychiatric evaluation, without any further dialogue.

Ethical issues & Legal requirements:

Case law, legislation, bioethics protocols and literature have grappled, for many years now, over how best approach terminating or withholding life sustaining treatment. Most cases have confronted situations where a patient is in a persistent vegetative state, or a terminally ill patient who could avoid needless suffering and prolongation of the process of death. For example, the California legislature passed into law §4650 of the Probate Code, declaring that “…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.”

In the conscious but incompetent, non terminally ill patient, however, these concerns do not apply. Nor are there any concerns here regarding demands for treatments that are medically futile. So, what are the ethical and legal issues presented in this scenario? A “best interest” criteria seems inapposite.  We cannot ethically conclude that this patient’s best interests are served by allowing her to die. It may be seen as beneficial to her family to avoid the burden of physically and financially caring for her. Considerations of burden on families are important and relevant, but not a justification for death due to lack of treatment.

The basis for an autonomous refusal of further treatment requires a sufficient showing, at the least,  that the patient has a clear and comprehensive informed consent, as well as time for reflection and deliberation, while understanding that death will likely follow if treatment is stopped. Case law refers to this level of proof in this situation as “clear and convincing evidence.” There, however, is no showing here that this patient would, if “satisfactorily” competent, refuse treatment. The psychiatric exam that concluded that the patient did not understand the nature of her disease process and the risks of treatment (and non treatment), did not establish anything of value. Yet, this brief, psychiatric exam  was sufficient enough to allow this patient, over my strenuous objections and pleas to stop, to be put on a gurney and wheeled out of the hospital by her son within moments of the psychiatric exam, and with out a neurologic and infectious disease evaluation. This patient understood that if she did not have surgery she would die, and that she would require one or both of her legs amputated. She understood that and asked for surgery so she could live.  What more must be required of her?

The California Supreme Court, in the case of Conservatorship of Wendland, required a showing by a conservator, of "clear and convincing evidence" that an incompetent, non terminal patient, would want to die, before life sustaining treatment could be withdrawn.

The lesson of this post, and the point to remember, is that the greater the cognitive and medical condition of a patient, the greater the level of scrutiny that is required before life sustaining treatment can be withheld or withdrawn.  We can look at this by considering six basic categories of the condition of a patient:

1.    Terminal and Persistent Vegetative State (PVS);
2.    Terminal and Minimally Conscious;
3.    Terminal and Conscious;
4.    Non Terminal and PVS
5.    Non Terminal, and Minimally Conscious;
6.    Non Terminal, and Conscious    

At each level, our degree of concern and the absolute necessity to delve further into the medical, personal, ethical and legal bases for the decision must escalate.  Primary treating physicians have help available to properly and earnestly accomplish this. Consulting physicians, clinical bioethicists, hospital ethics committees, and if necessary, courts of law, are available to achieve an ethical, legal and life and death determination.

The greater the ambiguity the more need there is to err on the side of protecting the patient and to err on the side of life. Such an effort serves to protect the life of the patient and protect physicians and hospitals from potential liability.

 

• Email This
• Print
• Comments
• Trackbacks
• Share Link