Palliative Care: End of Life

Palliative Care
Written By Sydney Oesch

Episode Notes

  1. National Quality Forum definition of “poor death”

    1. Receiving chemotherapy in the last 14 days of life

    2. Being admitted to the ICU within the last 30 days of life

    3. Dying from cancer without admission to hospice or within 3 days of admission to hospice

  2. Prognosis

    1. 3 realms: curability, response to treatment, survival

      1. Before answering questions about prognosis, clarify which information the patient desires

    2. Affects life choices, goals of care, and impacts clinical outcomes

      1. Informative conversations improve mental health, quality of death, and allow for better bereavement adjustment in their caregivers

    3. Honesty and hope are not mutually exclusive!

  3. Framework for Prognosis Conversations

    1. “Best case scenario, worst case scenario, most likely scenario”

    2. Any mention of the future can be an opportunity to talk about prognosis

    3. Ideal times to bring this up… end of upfront treatment, change in treatment due to progression

  4. Strategies for Prognostication

    1. We are notoriously bad as physicians…

      1. Physicians overestimate prognosis by 3-5 fold when communicating with patients near the end of life - more pronounced when doctors and patients have longer preexisting relationships

    2. Overall Survival Data

      1. Use published research matched to your patients (but we don’t always have this)

        1. “Cancer survival statistics (however unfavorable) pertain only to populations or cohorts… for individuals, it’s either 0% or 100%” -Dr. Bill Creasman, SGO president 1988

    3. Signs and Symptoms

      1. Decreased performance status, persistent hypercalcemia, CNS metastases, delirium, cachexia, malignant effusions, need for palliative stenting or venting gastrostomy

      2. 4Ds: dyspnea, delirium, decline (of performance status), dysphagia

      3. Labs: albumin <3.5 or CRP >10

      4. Physical exam: reduction in maximal hand grip or maximal expiratory pressure

    4. Validated Scoring Systems

      1. Palliative Performance Score (PPS)

        1. Developed by Victoria Hospice Society in Canada in 199

        2. Ranges from 100% (fully functional) to 0% (death) in 10% decrements based on 5 domains

          1. Ambulation, activity level and evidence of disease, self-care, oral intake, level of consciousness

        3. PPS < 70%: pts w/ palliative care needs

        4. PPS ≤ 50%: significant decline, may signal eligibility for hospice

        5. See Appendix A for chart

      2. Palliative Performance Index (PPI)

        1. Predicts survival time

        2. PPS + oral intake, presence of edema, dyspnea at rest, delirium

        3. Higher score (6.1-15): shorter life expectancy in terms of days

        4. Lower score (0-4): expectancy in terms of months

        5. See Appendix B for chart

    5. Conversation Framework

      1. “Set the Stage”: schedule sufficient time, find a chair for everyone to sit, know where tissues are

      2. ADAPT model

        1. Ask what the patient already knows

        2. Discover what they want to know

        3. Anticipate ambivalence: patients will likely feel worried or ambivalent about the conversation

        4. Provide desired information/ask permission

          1. Use concise, simple language to deliver information; follow with silence

          2. Provide a range - try to not be overly specific

        5. Track emotion and respond

      3. NURSE statements for responding to emotion

        1. Name the emotion

          1. Try to phrase this as a hypothesis vs telling them how they feel

        2. Understand the emotion

          1. Show empathy and try to reflect the patient’s perspective

        3. Respect the patient

          1. Affirm the patient’s strength, values, or efforts

        4. Support the patient

          1. Offer presence or ongoing support

        5. Explore the emotion

          1. Invite the patient to say more

      4. Pitfalls

        1. Missing the patient initiated on-ramp opportunity

          1. I.e. providing information that answers a concrete question (i.e. response rate) without addressing the underlying question

        2. Prematurely abandoning the opportunity to discuss prognosis

        3. Shattering hope by shutting down an outlier outcome

          1. “We would not turn down a miracle” or “I’m hoping for a miracle too”... “I worry…”

  5. Hospice

    1. Definitions

      1. Subset of palliative care that provides end-of-life services to a patient or their family outside of the hospital

      2. Insurance benefit available to people with a life expectancy < 6 months who are no longer pursuing disease-directed therapy

        1. Anyone with a metastatic tumor who is not pursuing disease-directed therapy will be a candidate

    2. Connor et al. 2007, Journal of Pain and Symptom Management

      1. Retrospective study of ~4500 Medicare beneficiaries

      2. Mean survival was 29 days longer for hospice patients vs non-hospice patients

        1. True for lung, pancreatic, colon cancer

        2. No significant difference for breast, prostate cancer

    3. Average Use Times

      1. Median length of stay for pts w/ Medicare: 19 days

      2. ¼ of patients receiving hospice die or are discharged from hospice within 7 days

    4. Conversation Framework

      1. Pitfalls

        1. “Stopping treatment”; reframe this as a strategy change - instead of aggressively treating the cancer, the focus shifts to aggressively treating the cancer symptoms (i.e. pain, nausea, shortness of breath)

      2. Benefits/Burdens

        1. Disease-directed therapy: what are the options, what are chances of response, what is the expected response, what are the side effects, symptoms, logistical burdens

    5. Rules

      1. Yes, can un-enroll and re-enroll in hospice as long as they meet eligibility criteria

      2. Maybe can continue to see you in oncology clinic depending on insurance and hospital system policies

    6. What Services?

      1. Different levels

        1. Routine home care (intermittent visits throughout the week)

        2. Continuous home care (at least 8 hours in a 24 hr period)

        3. Adjunctive care in nursing facilities

        4. General inpatient hospice care

          1. Must have symptoms uncontrolled at home, have prognosis of hours or shot days, and/or a preference to not die at home

      2. Insurance Coverage

        1. Yes, covers

          1. Comfort-focused medications

          2. Durable medical equipment (i.e. hospital bed, bedside commode)

          3. Clinical services from interdisciplinary team (physician/APP, RN (available 24/7 by phone), social worker, chaplain)

          4. Limited hours for home health aide (~3 hrs per day up to 4 days per week on average)

          5. Occasional respite care for family members

          6. Bereavement support

        2. No, does not cover

          1. Nursing home room and board (although adjunctive hospice care can be provided in this setting)

          2. 24/7 home care

          3. Palliative procedures - paracentesis, thoracentesis, radiation

          4. Blood transfusions

        3. Other conditions?

          1. Insurance-related hospice benefits only cover care related to the hospice diagnosis

          2. Coverage for other medical conditions is highly variable from hospice to hospice and insurance to insurance (i.e. antibiotics, anticoagulation)

  6. Medical Aid in Dying (MAID)

    1. “A medical practice in which a terminally-ill adult of sound mind may ask for and receive a prescription medication they may self-administer for a peaceful death if and when their suffering becomes unbearable”

    2. Legal in 10 states in the US

    3. Requirements

      1. Adult

      2. Terminally ill with a life expectancy of <= 6 months

      3. Mentally sound (able to make health care decisions and understand consequences)

      4. Able to administer their own medication

    4. Process

      1. About 5-15 minutes to reach unconsciousness; 25 minutes - 3 hours to die

    5. Stats

      1. ~60% of patient who receive rx for MAID will ultimately use it

      2. 70% of Americans agree w/ MAID policies

    6. NCCN Guidelines

      1. Make sure palliative care needs of the patient are being met

        1. Assess symptoms, any psych issues, relationship, values, worries for caregiver burden

      2. Address request explicitly

        1. If a patient uses a euphemism for death or refers to death indirectly, ask for clarification

      3. Distinguish the will not to live in the current state from a wish for a hastened death

      4. Make sure you know your state laws

  7. Death and Dying

    1. “Syndrome of Imminent Death”

      1. Stereotypical pattern of symptoms that most patients experience in the days leading up to death; aka “active dying”

      2. Variable amount of time - less than 24 hours to 14 days

    2. Stages

      1. Early: bed bound, lose ability to eat/drink, cognitive changes (increased time sleeping or w/ delirium)

      2. Middle: longer periods of obtundation (with brief periods of wakefulness w/ slowness to arose w/ stimulation), decreased UOP

      3. Late: pooling of oral secretions due to loss of swallowing reflex (“death rattle”), periods of apnea or hyperpnea, neck hyperextension, coma, fever, mottled extremities

    3. Interventions for comfort

      1. Oral secretions

        1. Non-pharm: Stop all IV fluids and enteral feeding; use gentle oropharyngeal suction, reposition in lateral position, counsel family that patient is not bothered by this

        2. Pharm: muscarinic receptor blockers (i.e. scopolamine)

      2. Delirium

        1. Only treat if causing distress/discomfort to patient

        2. Pharm: 1st gen antipsychotics (haloperidol, chlorpromazine)

          1. IV and SQ haldol option cause less extrapyramidal symptoms but worse QTc prolongation

          2. Chlorpromazine more sedating than haldol

          3. 2nd gen aren’t more effective but may be better in pt w/ h/o extrapyramidal reactions

        3. Use benzos with caution - can make delirium worse or precipitate withdrawal symptoms; only use if significant anxiety component

      3. Dyspnea

        1. Ddx: obstructive airway processes, metastases, effusions, pneumonia, drug reactions, emboli, SVC obstruction, heart failure, pericardial effusions, arrhythmias, restrictive processes

        2. Non-pharm: upright position, increasing air movement in room or using fan directed toward the face, bedside relaxation techniques, breathing techniques (pursed lip breathing, diaphragmatic breathing)

          1. O2 only helpful if associated hypoxemia

        3. Pharm: opioids ae drug of choice

          1. Dosing depends on opioid tolerance

            1. Opioid naive: 1-2 mg IV morphine

            2. If severe: 1-3 mg IV every 30 min to 1 hr or a PCA

          2. Educate families that dyspnea mgmt w/ opioids does not hasten death and is not being prescribed for that reason

          3. Antitussives for cough, anticholinergics for secretions, anxiolytics

      4. Pain

        1. Include a basal/hourly dose at this phase of care

        2. Total: basal/hourly rate + patient-directed boluses + nurse/provider-directed bolus

        3. Give a loading dose when starting infusion since can take many hours to reach steady state

        4. In comfort-care setting, dose frequency is allowed to be closer together

        5. Don’t change the basal rate more frequently than every 8 hours

        6. If pts develop anuria or have significant kidney dysfunction close to death, discontinue basal rate to avoid metabolite accumulation, agitated delirium, myoclonus, and allodynia

      5. Hunger and Thirst

        1. One of the most difficult things for families/caregivers

        2. 40-90% of dying patients report significant thirst

          1. Important to differentiate between thirst and dry mouth

          2. Offer daily oral care and sips of oral fluid for comfort

        3. Loss of oral intake is not uncomfortable for patients

          1. For families, concern about nutrition is really a statement about grief or loss

        4. In end stages of life, artificial nutrition or hydration can lead to worsening GI discomfort, nausea, loose stooling (which can lead to skin breakdown), aspiration, volume overload symptoms

    4. All of these end of life care practices that we have discussed today are intended to support peaceful death - one that aligns with the patient’s and family’s definition - often centered on freedom from pain, spiritual peace, and the presence of loved ones - a goal that is equally valued by use, their healthcare providers, who are committed to honoring them in dying and in death.

Appendix A

Palliative Performance Scale (PPS) Example

Appendix B

Palliative Prognostic Scale (PPI) example

Reference List

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Sydney Oesch
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Palliative Care: Procedures and Goals of Care