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WHEN PATIENT & FAMILY CONFLICT OVER DECISION: Ethical Considerations for the Competent Patient
LIZA C. MANALO, MD, MSc. PALLIATIVE CARE
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
SALIENT POINTS
40 year old female, married, nulligravid Diagnosis: AdenoCA Left Ovary, Stage IV S/P Explore lap, Left Oophorecystectomy Left Infracolic omentectomy Bilateral Lymph node dissection S/P Explore lap, Tube Jejunostomy, due to PGO due to adhesions Type 2 DM Acute Kidney Injury, 20 to hypoperfusion
Liza Manalo, MD
SALIENT POINTS:
Medical treatment options, including chemotherapy, as well as palliative and hospice care, and the prognosis of the disease were fully explained to the family. The patient knew about the cancer diagnosis, but the actual stage and prognosis were not disclosed to her, per familys request. Patient is amenable to chemotherapy, pain management, artificial nutrition and hydration, blood transfusion, and IV medications, but not to CPR, intubation, and mechanical ventilation. However, advance directives were not formally discussed and signed by the patient. The patients natural family (parents and siblings) knew of the patients wishes, but left the decision-making to the husband. When the patient went into respiratory distress due to hospital acquired pneumonia, T/C sepsis, and had a CP arrest, the husband agreed and signed the consent for CPR, intubation, mechnical ventilation and ICU admission.
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
ETHICAL PRINCIPLE:
TRUTH-TELLING (DISCLOSURE)
In general, necessary items to disclose include: a) the patients current medical status including the likely course if no treatment is provided. b) the contemplated procedure or medication c) alternative available procedures or medication d) anticipated risks and benefits of both e) a statement offering an opportunity to ask further questions f) a professional opinion about the alternatives g) in case of research, his right to withdraw any time
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
ETHICAL PRINCIPLE:
Informed consent - the willing and uncoerced acceptance of a medical intervention by a patient after adequate disclosure by the health professional of the nature of the intervention, its expected risks, and benefits, and alternatives available, before that treatment is administered.
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
ETHICAL PRINCIPLE:
choices, understand information about a treatment decision, and appreciate the situation, and its consequences
Appelbaum PS, Grisso T. (1988)
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
Resolving Conflict Between the Principles of Autonomy and the Sanctity of Life can be Difficult What does one do when a competent adult patient decides on a course of action that may shorten his or her life, as in the case of a Jehovah's witness who refuses a potentially life-saving blood transfusion?
The Jehovah's witness does not want to die but is prepared to do so because of a religious conviction. In North America, this competent patient's autonomy and right to refuse medical intervention would be respected.
Jonsen AR, Siegler M, Winslade WJ (1986)
Liza Manalo, MD
Adapted with permission from Education for Physicians on End-of-Life Care Trainer's Guide, Module 11, withholding, withdrawing therapy. In: Emanuel LL, von Gunten C J, Ferris FD. Education for physicians on endof-life care/Institute for Ethics at the American Medical Association. Chicago, IL: EPEC Project, The Robert Wood Johnson Foundation, 1999.
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
There are many factors involved in decisions to limit life-sustaining therapy. From the medical point of view, the 1st requirement is that there is at least acceptance and at best consensus agreement among all the members of the medical team, to limit therapy when hope for recovery is outweighed by burden of the treatment. Prognosis in critical illness is often uncertain. Physicians and families may disagree about how to value a small chance of improvement or to weigh the continuing burdens of treatment.
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
The patients wishes for continuation or discontinuation of treatment are of paramount importance. ADVANCE DIRECTIVES - A competent, adult patient may, in advance, formulate and provide a valid consent to the withholding or withdrawal of life-support systems in the event that injury or illness renders that individual incompetent to make such a decision.
A patient may also appoint a surrogate decision maker in accordance with the law (durable power of attorney for health care).
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
Surrogate consent
If the patient has expressed preferences in the past, the surrogate must use knowledge of these in making the consent. If patients own preferences are unclear, surrogate must consider the patients best interest using some more objective, socially accepted values, such as relief of suffering and preservation or restoration of function. For minors, this is usually given by parents or guardians.
Liza Manalo, MD
What does the medical team do when a competent patient has previously refused treatment, but the surrogate decision-maker consents to heroic/aggressive measures when the patient is no longer able to decide for herself?
It is essential not to abandon the patients family members, but to work closely with them in determining why they are making decisions that do not appear to be promoting the patients best interest. This exploration, combined with ongoing education by all the members of the health care team, is ethically desirable, in order to make the surrogate decisionmaker realize that both he and the medical team have the duty to respect and uphold the patients right to self-determination in health care. Liza Manalo, MD
There is no ethical distinction between withdrawing and withholding life-sustaining treatment. Medical treatment should only be withdrawn or withheld on clinical grounds. Every such decision should be made upon its own merits and must not be made on the basis of either cost or medical convenience.
Liza Manalo, MD
Limitation of treatment should be regarded as a formal procedure subject to the same preparation, thought, care, and consent as for any other aspect of care.
When patients are admitted, there needs to be a clear plan for their management, including definitions of the limits of any invasive interventions. The physician, patient, and/or family jointly define the goals of treatment.
Liza Manalo, MD
MEDICAL TREATMENT:
Withholding or Withdrawing Life Sustaining Treatment
Taking away the proportionate means of preserving life, such as ordinary feeding, hydration, and normal medical care
If the harm outweighs the good, then disproportion probably exists and means is probably morally extraordinary.
Liza Manalo, MD
Whether a treatment is ordinary or extraordinary depends upon the balance between 2 sets of factors:
On one hand, we have to consider the physical, psychological, economic and other harm which a given modality of treatment is expected to cause, first of all, to a patient, but also to his or her relatives and friends as well as to society.
Liza Manalo, MD
Whether a treatment is ordinary or extraordinary depends upon the balance between 2 sets of factors:
On the other hand, we have to take into account the degree of probability, if any, first of all, that the patient will be cured or will be able, for a significant period of time, to live on under humanizing conditions.
Liza Manalo, MD
Liza Manalo, MD
Cardiopulmonary resuscitation
CPR is a combination of breathing for the victim-to supply oxygen-and compressing the chest wall, which squeezes the heart and pushes blood out to vital organs. In this way, oxygen is delivered to the brain and to the arteries of the heart itself. After a cardiac arrest, unless breathing and circulation are established within four to six minutes, brain death and permanent death start to occur.
The chance of survival diminishes 7-10% for every minute without defibrillation and CPR. At 8-10 minutes post-episode, a victim has virtually no chance of survival.
CPR cannot preserve life indefinitely, but it can keep a person alive until more effective medical intervention is available to restore normal heart function.
Liza Manalo, MD
Liza Manalo, MD
Do Not Resuscitate
DNR does not mean no care; it means a different kind of care that can best be achieved through end-of-life protocols and education.
Fields, 2007, Journal of Neuroscience Nursing
Liza Manalo, MD
aimed at maintaining organ function that only prolong death may be withdrawn or withheld
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
Are physicians legally required to provide all life-sustaining measures possible? No. To the contrary, patients have a right to refuse any medical treatment, even lifesustaining treatments such as mechanical ventilation, or even artificial hydration and nutrition.
-Emanuel LL, von Gunten C J, Ferris. (1999). Education for Physicians on End-of-Life Care Trainer's Guide.
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
Can large doses of opioids to relieve pain, breathlessness, or other symptoms constitute euthanasia?
No. For patients who have been using opioids for pain, it is very difficult to give such high doses that death is caused or even hastened in the absence of a disease process that is leading to imminent death. Patients tend to sleep off the effect if they receive too much medication. However, in the rare circumstance when opioids might contribute to death, provided the intent was genuinely to treat the symptoms, then opioid use is not euthanasia.
-Emanuel LL, von Gunten C J, Ferris. (1999). Education for Physicians on End-of-Life Care Trainer's Guide.
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
HOPE
Hope lies not only in an expectation of cure or even of the remission of present distress. For dying patients, the hope of cure will always be shown to be ultimately false, and even the hope of relief too often turns to ashes. When my time comes, I will seek hope in the knowledge that insofar as possible I will not be allowed to suffer or be subjected to needless attempts to maintain life; I will seek it in the certainty that I will not be abandoned to die alone; I am seeking it now, in the way I try to live my life, so that those who value what I am will have profited by my time on earth and be left with comforting recollections of what we have meant to one another. - Nuland, Sherwin B (1994). How We Die: Reflections on Lifes Final Chapter
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
HOPE
There are those who will find hope in faith and their belief in an afterlife; some will look forward to the moment a milestone is reached or a deed is accomplished; there are even some whose hope is centered on maintaining the kind of control that will permit them the means to decide the moment of their death Whatever form it may take, each of us must find hope in his or her own way. - Nuland, Sherwin B (994). How We Die: Reflections on Lifes Final Chapter
Liza Manalo, MD
Liza Manalo, MD
SUMMARY
Competent patients have the right to make decisions about their own treatment, the right to accept or refuse medical care. When further intervention to prolong the life of a patient becomes futile, physicians have an obligation to shift the intent of care toward comfort and closure.
Liza Manalo, MD
SUMMARY
Withholding or withdrawing life-sustaining therapies is ethical and medically appropriate in these circumstances. Before reviewing specific treatment preferences, it is useful to ask patients about their understanding of the illness and to discuss their values and general goals of care.
Liza Manalo, MD
SUMMARY
Terminally-ill patients with decision-making capacity can opt to forego any extraordinary medical intervention aimed at maintaining organ function that only prolong death. If the patient is unable to make his/her own medical decisions and has expressed preferences in the past, the surrogate must use knowledge of these in making end-of-life decisions on behalf of the patient. Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted.
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD
We have to ask ourselves whether medicine is to remain a humanitarian and respected profession, or a new but depersonalized science in the service of prolonging life rather than diminishing human suffering.
It's only when we truly know and understand that we have a limited time on earth and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.
- Elisabeth Kubler Ross
Withholding or Withdrawing Life Sustaining Treatment Liza Manalo, MD