Death, dying, medical futility

Advance directive

• general term: any formalized, written legal instructions regarding pt’s preferences for medical care should they be incapacitated or otherwise unable to make decisions for themselves

• allows for pt to make these decisions before the need arises; relieves pressure on family or loved ones when time to address these issues arrives

• are state-specific but usually contain the same elements

Living will

• One of the primary components of an advance directive (the other being medical power of attorney) where a patient outlines the medical interventions, treatments, procedures and meds they do or do not wish to receive

• In the case of a patient becoming incapacitated or otherwise deemed unable to make their own decisions, the patient’s medical power of attorney or the medical team will consult the living will to determine how to proceed with care

Physician Order for Life-Sustaining Treatment (POLST)

• A process and a form

• Intended for the frail or seriously ill whose provider would “not be surprised if they died within a year”

• Allows for more specific directions compared to advance directives or do not resuscitate orders

• Travels with the patient to ensure their wishes are carried out no matter what setting they are in (hospital, nursing home, assisted living, or their own home)

  • A caveat to this is that EMS must consult with command physician before withholding resuscitation

Guardian

• An adult considered legally responsible for the care and custody of a minor or another adult (typically someone who is mentally or physically incapacitated), they may be authorized to make legal, financial or health care decisions via the courts

• Durable Power of Attorney

Grants an “agent” the power over an individual’s financial affairs, including banking, legal and business interests (durable means it remains in effect when the grantor becomes incapacitated)

Health Care Power of Attorney

• Grants an “agent” medical decision-making power

Code status

• Describes the type of resuscitative procedures and interventions a patient (or their agent) elects to receive should they experience a respiratory or cardiac arrest

• Do not resuscitate (DNR)

Pt does not want any resuscitative measures, including CPR, intubation, defibrillation, administering of resuscitative medication

Do not intubate (DNI)

Pt doesn’t want to have an endotracheal tube inserted or to be placed on a ventilator to sustain respirations

• Do not hospitalize (DNH)

This order can be incorporated into a POLST, often this is not an absolute order but may be nuanced

key points of the 1990 Patient Self Determination (PSD) Act

• Required that all healthcare institutions receiving Medicare and Medicaid funds provide patients with written information about their state rights to execute advance directives, the right to accept or refuse treatment, and the right to facilitate their own healthcare decisions  

• The written information must clearly state the institution’s policies on withholding or withdrawing life-sustaining treatment  

• Also requires the institution to indicate whether or not a patient has executed an advance directive  

• Patients with advance directives cannot be discriminated against

Describe and identify the penalties of not following the PSD Act.

• Loss of Medicare and Medicaid Funding – Since the PSDA applies to healthcare providers receiving federal funding (such as hospitals, nursing homes, and hospices), non-compliance may lead to a reduction or termination of these funds.

• Legal Liability and Lawsuits – Patients or their families may file legal claims if they are not properly informed about their rights, potentially leading to malpractice suits or other legal consequences.

• Regulatory Fines and Sanctions – Non-compliance can result in fines or other penalties imposed by federal or state regulatory agencies.

• Accreditation Issues – Healthcare facilities that do not follow PSDA requirements may face issues with accreditation bodies, such as The Joint Commission, which could impact their ability to operate.

• Reputational Damage – Failure to comply with the PSDA can harm a facility’s reputation, leading to loss of patient trust and potential declines in patient enrollment.

• Palliative medicine

• Involves preventing or controlling symptoms and side effects while still pursuing curative treatment

• Hospice Care

• Palliative care and symptom control. terminally ill

• Palliative medicine

• Component of hospice care, but may also be offered at the same time as disease treatment

• Involves preventing or controlling symptoms and side effects

• Palliative care should be part of the plan for any pt facing a life-threatening illness

• Hospice care

• Terminal illness will no longer be the focus of the pt’s treatment

• Generally, pt enter hospice care when life expectancy reaches 6 months or less

• Should not be viewed as giving up on the pt, pts able to resume treatment if they choose to

• Palliative care and symptom control

• Available both in-home and inpatient/long-term care settings

• Spiritual care

• Care coordination

• Respite care

  • taking a break from caring, while the person you care for is looked after by someone else

• Bereavement care

  • Type of support that helps people cope with loss and grief

Identify and describe the AAPA’s stance on advanced directives as it applies to the

Guidelines for Ethical Conduct for the PA Profession.

• PAs should provide patients with the opportunity to plan for end-of-life care

• PAs should assure terminally-ill patients that their dignity is a priority and that relief of physical and mental suffering is paramount

• PAs should explain palliative and hospice care and facilitate patient access to those services

• PAs must weigh their ethical responsibility to withhold futile treatments and to help patients understand those decisions

Ordinary measures

“means of treatment available that are objectively proportionate to the prospects for improvement”

Extraordinary measures:

“medical procedures or interventions which no longer correspond to the real situation of the patient, either because they are now disproportionate to any expected results or because they impose an excessive burden on the patient and their family”

Describe and identify the principle of the “double effect.”

• Providing medication which is intended to relieve the patient’s suffering while at the same time risking the possibility of unintentionally shortening the patient’s life

• This risk of shortening the patient’s life must be proportionate to the degree of the patient’s suffering

• This is an accepted part of medical practice and is considered legal

List and describe the 5 stages of grief according to Elizabeth Kubler Ross.

• Denial (shock)

  • Survivor has not accepted the death (emotionally or mentally)

  • Common manifestation: expecting the deceased to contact them or to show up

• Bargaining (guilt)

  • Retrospectively bargaining for the life of the deceased

    • “If I had only done this”

    • They died because “I didn’t do that”

    • May have significant feelings of guilt or remorse for things left unsaid or undone

• Anger

  • Directed at multiple targets

  • The deceased:

    • “How could you leave me like this?”

  • God/higher being/universe:

    • “Why would you take my whole world away from me if you love me so much

  • Providers

    • “They could’ve done more

  • Self

    • “I could have prevented this”

• Depression

  • Pt or bereaved realize that anger and bargaining are ineffective

  • For the dying:

    • Reactive depression: what is already lost

    • Preparatory: what will be lost

• Acceptance

  • Resolution

  • Survivor moves forward in life

  • Does not mean they are no longer bereaved

Clinically-assisted suicide

• More often referred to as aid-in-dying or physician-assisted dying, it permits a mentally competent, adult patient with a terminal illness to request a prescription for life-ending medication from their physician

  • The patient must administer the medication without assistance from the provider

  • Legal in CA, CO, DC, HI, ME, NJ, NM (one county), OR, VT, and WA (PA is considering a death with dignity statute). Must have residency of the state

Medical Euthanasia

• defined as the act of painlessly, but deliberately, causing the death of a patient suffering from an incurable, painful disease or condition

  • Further categorized as active (with the provider’s actions causing the death) or passive (the provider withholds or does not act)

  • Active euthanasia is illegal in all 50 states.

  • The Netherlands, Belgium, Canada, Spain, and New Zealand are nations which have legalized active euthanasia

    • In the Netherlands, they saw the highest number of euthanasia deaths (nearly 7000, ~4% of total deaths) in 2020 since legalization

Define and identify medical futility and the 3 categories by which something can be judged

to be futile.

• Care that will have little to no effect on the pt’s outcome or prognosis

• AMA defines medically futile treatments as those having “no reasonable chance of benefiting the patient”

  • Physiological futility (quantitative futility)

    • Applies to treatments that fail to achieve their intended physiologic effect and are based not on vague clinical impressions

  • Imminent-demise futility

    • Despite the proposed intervention, the patient will die in the very near future

  • Lethal-condition futility

    • Patient has a terminal illness that the intervention does not affect and death will result in the not-too-distant future

Four tasks of mourning: by J.W. Worden

1. Accepting the reality of the loss: they have died and are never coming back

   1. They must overcome denial of the facts of the loss, the meaning of the loss, and the irreversibility of death

2. Working through the pain: allowing yourself to feel/experience the pain

   1. Can be impeded by: thought blocking, focusing only on positive things/distractions

3. Adjusting to a New Environment: The bereaved take on new roles

   1. May experience resentment when being faced with new responsibilities

   2. Lower self-esteem as they learn new roles/skills

4. Emotionally Relocate the Loss: Involves forming a relationship with memories instead of the decedent

   1. Allows for moving forward; holding on to the relationship will hinder the survivor’s ability to grow

Physical Manifestations of Grief

• Sleep disruptions

• Headaches

• Weight loss

• Increased susceptibility to infections

• Chest pain

• Fatigue

Grief and Children

• Grief reactions depend on developmental stage

• Children younger than 5 cannot grasp the permanence of death

• Magical thinking may affect child’s view of their “role” in the death

• Kids from 5-10 have a better understanding of death