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Flashcards in End of Life Care Deck (39):

end of life care

o Involves both palliative care and hospice care.
o The terms “palliative care” and “hospice care” are frequently used interchangeably, but they differ.
o Palliative care is not always hospice care.
o Hospice care always involves palliative care.


palliative care

o The goal is symptom relief, improvement of function, and improvement of quality of life.
o Both acute and chronic illnesses may require palliative care.
o The symptoms may be physical, mental, emotional, and/or spiritual.
o Non Hospice Palliative care routinely inform patients and families about hospice and other community based healthcare resources consistent with the patient’s and their families beliefs and values.


hospice care

o The patient has: less than 6 months to live.
o The patient’s goals of care clearly change: from “cure” to “comfort.”
o Treatments and medications are geared to the goal of comfort.
o Not set in stone, patients may leave and return to hospice care during EOL time.


attitudes about dying

o Medical
o Societal
o Cultural
o Individual
o Familial


fantasy death

o To die with loved ones at bedside.
o To be peaceful.
o To be old.
o To die quickly and without suffering.


what really happens

o 60% of deaths occur in an acute care setting.
o 20% of deaths occur in a LTC setting.
o 5+% of deaths occur in “other” settings (i.e., accidents, suicides, homicides, other sudden death).
o The remainder of deaths (<20%) occur at home.
o 40+% of people who die in acute and LTC settings die in significant pain – the incidence of pain is greater in LTC.
o 60+% die without spiritual or psychological support.
o <7% of deaths occur in a hospice setting.
o >70% of people who die in acute and LTC settings are alone at the time of death.
o Less than 10% die with hospice support.


hospice eligibility

o Insurance requires a prognosis of < 6 months.
o For Medicare, and some other insurances, recertification can be done at the end of 6 months.
o Patients can sometimes move in and out of hospice care.
-CHF, COPD, Renal failure, cirrhosis/liver failure, dementia, stroke


CHF hospice eligibility

-Class IV failure
-EF <20%
-2-3 admissions to acute care in one year.


COPD hospice eligibility

-O2 dependent,
-poor response to bronchodilators, tires after walking a few steps, resting PCO2 >50,
-O2 sat on room air <88,
-PO2 < 55 on O2,
-cor pulmonale, wt loss,
-HR >100, 2-3 acute admissions in one year.


Renal failure hospice eligibility

-creatinine >8.0
-off dialysis


cirrhosis/liver failure hospice eligibility

-mostly bed bound,
-albumin <2.5,
-INR >1.5,
-+ one of the following: encephalopathy, spontaneous bacterial peritonitis, refractory ascites, recurrent variceal bleed, hepatorenal syndrome.


dementia hospice eligibility

-bed bound
-mute (except for occasional vocalization)
-unable to ambulate
-aspiration pneumonia
-progressive wt loss
-and at least one of following occurring in the past year: pyelonephritis, sepsis, pressure ulcers, fever after antibiotics, dysphagia.


stroke hospice eligibility

-poor nutritional status
-albumin <2.5
-recurrent medical problems as with dementia.


hospice eligibility for medicare and most insurance

-DNR is not a requirement – but it is strongly encouraged. It is, however, a requirement of many agencies providing in home hospice


dying trajectories

o Concept of “dying trajectory” introduced by Glaser & Strauss in 1965.
o Refers to the changes in health status over time as the patient nears death.
o Graphically time is shown on the “X” axis and health is shown on the “Y” axis.


predictable trajectory

-Eg: patients with cancer
-Family support
-Symptom control
-Continuity of relationship
-Life closure
-Adaptability to rapid changes


erratic trajectory

-for example, for patients with organ system failure, heart failure, COPD, renal failure
-Preplanning for urgent situations
-Life closure
-Prevention of exacerbations
-Decision making about benefits of low yield treatments
-Support at home
-Prepare family for “sudden death”


long term gradual decline

-Eg patients with dementia and frailty
-Long term home care service and supervision
-Helping carer to find meaning
-Avoiding unnecessary lingering
-Keeping skin intact
-Finding moments of joy and meaning for the patient
-Predictable trajectory



o Recent studies indicate 63% of physicians are overly optimistic.
o 17% are overly pessimistic.
o On average, physicians overestimate life expectancy by a factor of 5!


prognosis: delivering the news

o Know about the diagnoses, treatments and medications.
o Know your patient, be familiar with cultural differences, the patient’s family (as the patient defines it).
o Speak in general terms, avoid technical details, go slowly.
o Do not give false hope – but do not take all hope away.
o Leave time for questions.
o Follow-up, schedule another visit within a week.
o Involve the patient’s support system (family, significant others, friends) as the patient desires.
o Refer to ancillary services as needed (SWS, psych, spiritual, etc.).


prognosis: answering how long

o Do not be definitive.
o Admit uncertainty.
o The patient is not a statistic.
o It is always different and depends on a number of factors.
o Give time in hours-to-days, days-to-weeks, weeks-to-months or months-to-years.


prognosis: looking to the future

Follow the GOOD.
-Goals: what are the goals of the patient and the patient’s support system, Involve all stakeholders – patient, family, other clinicians, etc. Major goals first, then specifics, check and recheck understandings, what is valued.
-Options: what are the relevant options, medical and non-medical, risks, benefits, and expected outcomes.
-Opinion: offer your opinion after listening to others. Patients need to know what you think, support your opinions with facts. Validate the beliefs of others.
-Document: List the participants of all discussions, what decisions were made and what was deferred. Current and Advance Directives list what the patient wants now and might want in the future.
-Document: DNR orders need to be specific. (i.e.,” Mr. S states at this time he would like resuscitation attempted. However, if it is believed he would be permanently unable to interact with his environment in a meaningful way, then he would wish comfort measures only.)
-Document – DNR orders: explain the meaning of resuscitation, mechanical vs. chemical, use of paddles and chest compressions, potential effectiveness. Be specific, be sure the patient understands benefits, risks, and percentages.


prognosis: advance planning

-Laws and documents vary from state to state and there is rarely reciprocity.
-Be sensitive to cultural differences.
-Be aware of regulations in your state, institutions, and ethics committees.
-DPA & DPAHC: encourage completion before serious problems arise. Available on line, most doctors offices, all hospitals and NH’s, through attorneys
-Advance Directives/POLST – specific instructions, usually accompany DPAHC.
-Living Wills: less detailed, have been replaced by powers of attorney. Not a legal document in many states. (Living wills mean that all the assets get posted in the newspaper and who gets them.)
-Wills/Living Trusts: not usually important in medical decisions.



o Be gentle, patient, caring.
o Keep it simple.
o Repeat important information in different ways.
o Make others feel Heard: Reflect responses to avoid misunderstanding.


what to ask

-What does the patient know? Family? How do they know it.? What do they believe is going to happen?
-What is wanted? What are the concerns?
-What is most important? Least? Overall goal?
-What are spiritual concerns? Faith community?
-Family issues? Unfinished business?


adequate pain control, constipation, N/V bowel obstruction

-Adequate Pain Control: may cause somnolence, confusion, diminished respirations
-Constipation: may occur with adequate pain control. Can be alleviated with meds
-N/V, bowel obstructions: can usually be alleviated medically
-Restlessness, anxiety: may be alleviated medically, but may become sleepy, less responsive
-Mouth care: important in relieving discomfort for mouth breathing patients, patients who are still eating.
-Dyspnea: the role of narcotics, oxygen
-Moist respirations – especially near the end of life. Discomfort, medical remediation (atropine vs suction)
-Feeding tubes – what is the goal? Risks, benefits, what else can be done. THEY DO NOT DECREASE RISK OF ASPIRATION!!!!
-IV’s – what is the goal? Risks, benefits.
-Psychic and spiritual distress.


treatment considerations

o Nutrition and Hydration
o There is often a perception patient is “starving to death”
o Enteral feedings do not reduce risk of aspiration or mortality
o Enteral feedings should be dcd at imminent death d/t malabsorbtion
o Hydration does not decrease “dry mouth”
o Morphine and Fentanyl (Used for both pain and anxiety, Morphine is avoided in renal failure, IV infusion or prn)
-Haloperidol or Thorazine (Used for agitation if pt is at risk for seizures)


treatment considerations: non-pharmacologic

-Modify environment: Reduce noise, soft music, limit light
-Consult other disciplines: Paliative medicine, art therapy healing services, pastoral care


the interdisciplinary approach

o The patient and the patient’s wishes and well being must be central.
o No one discipline should have more weight than any other.
o The Care Plan is the responsibility of all disciplines working in accord.
o Quality of Care and Quality of Life is everyone’s concern.


the interdisciplinary approach: the team

o The patient, surrogates, family and significant others
o Medical staff – physicians, consultants, PA/NP.
o Nursing – Supervisors, floor staff (RN, LVN, NA
o Social Worker
o Psychology / psychiatry
o Chaplain / spiritual advisor
o Dietician
o Pharmacist
o Voluntary services and organizations
o Others – massage therapists, cosmetologists



o Regular assessment of psychological reactions to illness including stress coping strategies and anticipatory grieving is doucumented and validated.
o Treats depression, suicidal ideation, anxiety, delirium associated with comorbidities



o Defined as the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature and to the sacred.
o Services are usually provided by board certified professional chaplains with sill and expertise to assess and address spiritual and existential issues.
o Spiritual needs must be identified by patient and family and met as well as possible by the team.


right to die

o Patient must be 18 and with only 6 months or less to live
o Two doctors must sign off on the dx and deem the patient mentally competent
o Patient must make an oral request for the prescription twice and 15 days apart and make a written request
o Patient must be able to administer drugs themselves without help
o Covered under Medicaid and Medi-Cal, Medicare and VA will not cover as not legal under federal law
o Common drug used is secobarbito which runs up to $5000 for single lethal dose.


the last 48 hours

o Sacred: hard work, respect for process and patient.
o Individual: in a dream like state, “over and back,” ceases to speak, or speaks rarely
o Senses are greatly diminished, vision first, touch and hearing are last to go.
o Pain may intensify initially, but frequently diminishes.


signs and symptoms of last 48 hrs

-Delirium. Confusion
-Nausea, vomiting
-Restlessness, agitation
-Jerking, twitching, plucking
-Mottling and coolness of extremities


herald signs of the last 48 hrs

-Noisy, moist breathing (death rattle), frequently more distressing to loved ones - ~23 hours before death
-Respirations with mandibular movement - ~2.5 hours before death
-Cyanosis - ~1 hour before death
-Lack of radial pulse - ~1 hour before death


support for family and loved ones

-Review what to expect
-Help them find the words (i.e., “I love you,” “We’ll miss you,” “We’ll be o.k.” “It is o.k. to let go.”)
-Help them to find things to do – talk to the patient, read to them, touch and stroke
-Reassure the loved ones – both regarding the process and that they are doing well
-Give loved ones permission to rest.


treatment considerations: withdrawal of life support

o When capable patient requests
o Prognosis for recovery to acceptable baseline is poor
o Death is near and inevitable
o Coma is expected to persist.


when death arrives

o Allow time for the loved ones to be with the patient. It may take some time to be comfortable with good-bye.
o Offer comfort and support. Listen, touch if it is welcome. Be willing to let loved ones be alone, but always have someone nearby
o Take care of yourself as well. We often forget to do that.