305-EOL decisions - Nursing 305 PDF

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End of Life Decision Making Margot Bentley: Requested that she “not be kept alive by artificial means or ‘heroic measures’, which includes nourishment or liquids.” - What is spoon feeding? Is it a health care intervention? There is a lot of greyness in directives. Charlie Gard: lived nine weeks. Dx encephalopathic mitochondrial DNA depletion syndrome MDDS). - Parents insist he is responsive. His MDDS has reached the terminal phase. His body is dying and life support that’s artificially sustaining his existence cannot halt the natural progression of the disease. What it can do, is temporarily prolong the agony of Charlie’s life: MDDS starves Charlie’s muscles, kidneys and brain of the energy needed to function and because of his epileptic encephalopathy, Charlie also suffers from frequent seizures and has extensive, irrepressible brain damage at both the structural and cellular level.  For: decreased quality of life for infant  Against: moral distress built up. Families don’t have an experienced health care knowledge. K’Aila: young boy was a few months when he was diagnosed with liver failure. Doctors suggested a liver transplant however parents disagreed. They thought it would doom him to pain and suffering and conflicted with their cultural beliefs. - Should parents deny the child the right to life-saving treatment? Dax Cowart: Burn Victum in 1970’s was treated with “barbaric measures - For TX: argued patient was encumbered. - Against TX: he’s in a lot of pain and suffering he is choosing not to Look at consent law, clear communication, active listening, a lot easier to not start something than to stop it once it’s going. Informed Consent 3 aspects of Informed Consent 1. Voluntariness: (make decisions without coercion). Pressure from family, friends, society to make a choice 2. Capacity: ( children, mental illness, disease progression (alzheimers))  Ability to understand what you are told  Need cognitive development (are they encumbered? If so person’s decisions will be made by someone else as they don’t have the ability to comprehend or have the capacity to make decisions. Can use resources such as OT-mini mental, exam. May be encumbered by coma, decsease progression, age, etc. 3. Comprehension (pain, language barrier, shock of new diagnosis)  Ability to understand what is being being told Exceptions to Informed Consent:  A health care provider may undertake triage or another kind of preliminary examination, treatment or diagnosis without complying with all he requirements to fully inform the adult as long as: a) The adult indicates that he or she wants to be provided with the health care, for example by coming to an emergency department or nurse practitioner’s office or b) In the absence of any indication by the adult, the adult’s spouse, near relative or close friend indicates that he or she wants the adult to be provided with health care  The rules regarding valid consent do not apply to urgent or emergency health care situations if the following circumstances are present: a) It is necessary to provide the health care without delay in order to preserve the person’s life to prevent serious physical or mental harm or to alleviate severe pain b) The adult is apparently impaired by drugs or alcohol or is unconscious or semi-conscious for any reason or is, in the health care provider’s opinion, otherwise incapable of giving or refusing consent; c) The adult does not have a Personal Guardian or Representative who is authorized to consent to the health care, is capable of doing so and is available; and d) Where practicable, as second health care provider confirms the first health care provider’s opinion about the need for the health care and the incapability

Substitute Decision Makers Court Appointed Committee (for incapable adult) Temporary substitute decision maker (TSDM) personal guardians, also called committees of the person, appointed by the court under the patients’ property act, Patient designated representatives (PDR):  Patient choses in advance who will make decisions if they are unable to (difference b/w POA & PDR) Advanced Directive  Make a directive in advance of a situation which can be followed by health care team if patient is unable to make the decisions (effective when person becomes encumbered)  ID terms in directive: how do you define: heroic measures, no intubation? Everyone thinks differently if receiving intubation do they want it short term or long term? Provides:  Directions regarding the persons wishes about care  Types of interventions wish to receive  Identify Life values: a) What makes life meaningful for them? b) View of the dying process, suffering, wishes for end life care (family, spiritual, music etc)  Identify substitute decision maker Legal requirements:  In writing and signed by the adult at a time when the adult was capable and be witnessed by two people (or one person if the witness is a lawyer or a member in good stand of the Society of Notaries Public of British Columbia). You cant identify every possible med situation. How does this affect how we advocate for the person’s wishes. Do you share the same understandings of the terms identified in the advanced directive? Invasive procedures, life support, what are other examples of words that could be misunderstood?  Do not Follow When: 1. 2. 3. 4.

5. 6. 7.

Does not deal with the health care decision at issue Is so unclear that it cannot be determined if the adult has given or refused consent to the health care; Is in conflict with the patient’s known wishes, values or beliefs; Was made prior to changes in medical knowledge, practice or technology that might substantially benefit the adult, unless the Advance Directive expressly states that it applies regardless of changes in medical knowledge, practice or technology Was not made voluntarily; Was obtained by fraud or misrepresentation; or The adult was not capable of making a decision about whether to give or refuse consent to the healthcare which the Advance Directive addresses.

Temporary Substitute Decision Maker (TSDM)  If no one has been previous assigned the HCT chooses in order: spouse, child’s parent, sibling, grandparent, grandchild, other relative, close friend  Is appointed when an adult is incapable of making a specific major or minor health care consent decision and there is no personal guardian (committee of the person) or representative appointed nor an advanced directive dealing with the situation.  A TSDM is chosen by a health care provider in accordance with a list set out in the HCCFAA IF there are no near relations or close friends available for the health care provider to choose, the health care provider must ask the Public Guardian and Trustee to authorize a person to be appointed as TSDM.  A TSDM may make a decision to refuse consent to health care necessary to preserve life but only if there is substantial agreement among the health care providers caring for the adult that the decision to refuse consent is medically appropriate  The TSMD must Consider 1) 2) 3) 4) 5)

The adult’s current wishes and known beliefs & values’ Whether the adult’s condition or well-being is likely to be improved by the proposed health care; Whether the adult’s condition or well-being is likely to improve without the proposed health care; Whether the benefit the adult is expected to obtain from the proposed health care is greater than the risk of harm; and Whether a less restrictive/less intrusive health care would be beneficial as the proposed health care

Substitute Decision makers - Judgments family members or HCP’s assume the patient would agree with if unencumbered - Valid info must be provided to support the position - Advanced Directive: proxy directives (PDR) & instructional directives (will of instructions). - 2 types of I. Directives: Means (max vs. min tx) and Ends (CPR, ventilation, blood transfusion, dialysis). - Instructional directives are not given independent binding force. If pt. states no blood in instructions, and substitute decision maker can’t be found, blood will not be given despite SDM’s absence. If however, situation is non urgent, directives can’t be acted on directly without SDM. - If there isn’t a designated SDM, Public Guardian and Trustee will appoint one but any instructional directive must guide this SDM. SDM can’t refuse life-sustaining tx if that conflicts pt advanced directive. If HCP is of opinion that SDM is not making a decision in keeping with the patient’s instructional directive the HCP is obligated not to act on that decision. - Instructional directives have the greatest weight when circumstances have been predicted & pt experience with condition. Problem = these directives are often insufficiently informed (especially in means orientated directives) 2 approaches for instructional dirrectives by HCP’s. 1) we should follow them no matter what 2) Allows room for discretion. i.e. ventilation should be used despite pt.’s wishes as it will result in overall comfort measures.

Best Interest Judgments - If substitute judgment can’t be made, a best interest judgment must be. - All considerations except what is best for pt. must be overridden. Consideration must be given to constraints r/t allocation of resources and potential risk to HCP’s. - Giving blood to premature infant of JW parents  dissention of family and church vs. babies health. Health = priority. - Legal test for best interest judgment is to ask “What would a reasonable person in this position want?” must also consider… 1) pt.’s current wishes 2) chance of pt’s condition improving 3) chance of pt deteriorating without tx. 4) If benefit of tx is > risk of harm 5) If less intrusive health care would be as beneficial as proposed health care - Bioethics committee of Canada Paediatric Society identified 4 circumstances in which life-sustaining tx. Can be forgone. Also can apply to adults… 1) Disease progression irreversible & imminent death 2) Tx is clearly ineffective/harmful 3) life will be severely shortened regardless of tx and the limitation of withdrawal of interventions will allow greater palliative and comfort care lives will be filled with intolerable suffering that can not be prevented or alleviated

If HCP’s think tx is harmful, & family disagrees, tx shouldn’t be given and a review initiated ASAP. The rationale is that HCP’s have an obligation to do no harm. This may be waived if the pt. is requesting the tx, but not when pt. isn’t the decision maker.

4 Exceptions to provide life-sustaining measures:  Irreversible progression to imminent death  Treatment which is clearly ineffective or harmful  Instances where life will be greatly shortened regardless of treatment & where non-treatment will allow a great degree of caring & comfort than treatment  Lives filled with intolerable & intractable pain & suffering that cannot be prevented or alleviate Resuscitation: - DNR do not resuscitate - Discuss MOST (medical order of scope of tx) - CPR is most effective for sudden arrhythmias related to cardiovascular disease - Usually not effective when the condition is not related to cardiac problems and is in the final stages of illness.

CNA Code of Ethics  Promoting & respecting informed decision making: C.11 “Nurses, along with other healthcare professionals and with substitute decision-makers, consider and respect the best interests of the person receiving care and any previously known wishes or advance directives that apply in the situations” What happens when there is a disagreement between what the patient wants and the substitute decision maker?  What do you do when you had a discussion with the patient and didn’t have time to follow-up with the DR before their status deteriorated?

Active Suicide Verses Passive Suicide: by withdrawing the ventilator the health care provider did not kill the patient but simply made a clinical judgment to return the patient to his/her natural state and the underlying disease process killed the patient. The HCP merely let the pt. die. Morally relevant difference! kill vs. relieve pain. If their Going to die anyway: we shouldn’t base our actions on the outcomes but the acts themselves. Five standard Arguments: There is the possibility of new cures, 2) there is always the possibility of misdiagnosis, 3) it’s impossible to know that consent is voluntary where the patient is unencumbered there is always the possibility of distorting pain or real/imagined pressures, or the best interests of the patient where the patient’s encumbered. 4) giving HCP’s right to kill erodes trust of their patients 5) slippery slope  less respect for life so that patient’s will nob be killed for compassion but social utility Medical Assistance in Dying: - MAiD - “purposeful and intended outcome is to assist a person explicitly requesting assistance in dying to end his/her life in a respectful, culturally appropriate, safe, ethical & competent manner” (CRNBC, p. 2) - Palliative care – “purpose is to improve the quality of life for a person experiencing a life-limiting illness. MAiD is not an appropriate alternative for a person who is seeking palliative care. While palliative care activities such as pain management or palliative sedation may result in the unintended hastening of death, the intended outcomes of these palliative care activities are to reduce intractable pain and extreme suffering at the end of life” (CRNBC pg 2-3) - Criteria of MAiD are on CRNBC handout. Have had to have had discussion with palliative care team. - Grievous condition; Advanced state of the disease and declining, the illness/disorder is intolerable for that patient. Natural Death is for-seeable. How is palliative care different? Palliative care is a philosophy of care where MAiD is a specific Act.. Implications • Provide a consistent care provider for Nursing • Be aware of the ‘reachable moment’ Care • Engage in active listening to defuse emotional buildup • Focus on comfort & symptom management (THIS IS OUR PRIORITY***) • Make use of your power position, negotiation & mediation skills in times of conflict • Promote discussion among all significant parties • Keeping the parties informed, finding out their ‘lived’ experience & dying experience most valued skills is when a nurse knows when not to speak. When we just listen. Power of Attorney: document that appoints a person (called an attorny) who is authorized by a capable adult to make financial, business and/or property decisions on their behalf. Attornys may not make health care treatment decision Representation agreement: is the document in which a capable adult names their representative to make health care and other decisions on his/her behalf when incapable Human Tissue gift Act: Regulates tissue and organ transplants in BC. Relies on donations of tissues/organs. BC transplant society develops the standards for these services. Legislation permits spouses and others to consent on behalf of adults and infants who are not registered in the system. Required to notify transplant society of a death of a person under 75 years. Required to approach next kin to obtain consent for organ or tissue donation. BC transplant society: - Living Donor o Donors - generally related to the organ recipient but it is not a requirement o Organs: Liver and Kidney o Deceased donation o Donation after Neurological Death (NDD) 

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Organs: Heart, lungs, liver, kidneys, pancreas & cornea

Donation after Cardio-Circulatory Death (DCD) Organs: lungs, liver, kidneys, pancreas & cornea Each organ has different inclusion and exclusion criteria for both the donor and the recipient

Absolute contraindications to transplant include  

Active malignancy Severe respiratory conditions

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Severe Ischemic heart disease Severe peripheral vascular disease Transplant candidate with cirrhosis Severe cognitive impairment Active drug or alcohol addiction Patient non-adherence to therapy

To potentially benefit from a transplant a patient should have (for kidneys)      

Progressive, irreversible renal disease No active malignancy or infection Absence of systemic disease which would severely limit rehabilitation Life expectancy greater than 5 years with a successful transplant Effective family or social support systems Willingness to comply with treatment and follow-up requiremens

To increase Organ donation: staff must document and request of all suitable patients, approach patients on admission with a request, patients must opt out if they do not wish to donate. Marketing strategies include offering to pay a lump-sum of funeral expenses. Also increase education round it.

Coroners Act A death must be reported to a coroner or a peace officer if a person has died under the following circumstances:  Violence, accident, negligence, misconduct or malpractice  Result of self-inflicted illness or injury  Suddenly or unexpectedly  From disease, sickness or unknowns causes  During or following pregnancy  Under a class of which the chief coroner as issued a notice for deaths to be reported  Person who received MAiD A death must be reported to a coroner or a peace officer if a person has died in the following institutions:  While the person was a patient of a designated facility or private mental hospital  While the person was committed to a correctional facility  If a person who was a transferred from one of the above locations and dies at a hospital Care of the dead body:  Must not move, alter or destroy the body, environment unless directed by the coroner Role:  Power to investigate deaths  Does not find fault but is authorized to disclose relevant facts of death after the inquest.  Goal is to make recommendations to prevent future deaths of similar circumstances Redefining Death Legal Definition of Death  With technological advances, new criteria were needed  Harvard Medical School criteria  brain death is cessation of all brain function (both cerebral and brain stem)  must be irreversible  This is the criteria used in most Canadian provinces and territories In cases of anencephalic neonates, the above criteria would not apply, as the brain stem functions but there is no cerebrum.  Some have suggested the definition include cortical death, which would include  anencephalic neonates  patients in a persistent vegetative state  Procedural and ethical questions would include  At what point would the declaration of death occur?  Would it apply universally?  Can death be redefined because it is suitable?

Pros: wound increase the pool of donors hwo had previously expressed a wish to donate and would allow parents of anencephalic infants to feel their children’s lives had meaning Cons: At what point is declaration made? When persistant vegetative state occurred, or when organs needed? Does it only apply to cases where organs are viable?

Readings: - Historically, the public rarely questioned health care provider decisions about life and death issues. - The Advances in technology and research however, has changed what patients can expect in terms of quality and quantity of life and this has changed the ethics landscape. - Our new technology combined with drugs and sophisticated surgical techniques, enables us to keep patients alive in circumstances tht could never previously have occurred. These measures are sometimes questioned in regards to is this in the best interests of the patient. Is it seen as sustaining life or delaying death? What is Donation after Cardio-Circulatory Death? (DCD) When a person’s heart permanently stops beating, they have experienced CardioCirculatory Death. Donation after Cardio-Circulatory Death (DCD) is an option for organ donation for patients with severe brain injuries once a decision to remove all life sustaining treatments has been made. What is Neurological Determination of Death? (NDD) Neurological determination of death (also referred to as ‘‘brain death”) means the brain has permanently lost all function and a diagnosis of death using neurological criteria has been determined. As a result of the severe brain injury or trauma your...