Download Last Hours of Living

Care for the Dying Patient:
Common Symptoms at
End of Life
Lisa Marr, MD
(Devon Neale, MD)
Palliative Medicine
Palliative Care and Hospice
Life Prolonging
Care
Hospice Care
Palliative Care
Objectives
• Understand prevalence and pattern of
symptoms near the end of life
• Present management recommendations
(with evidence base, such as it is…)
• Provide practical tips to improve care of
patients and families in last days of life
What is a good death?
What is a good death?
Steinhauser et al. Factors considered important at the End of Life by Patient,
Family, Physicians, and Other Care Providers. JAMA 2000.
Evidence for Care at End of Life
• Large trials (e.g. SUPPORT) or surveys
describing symptom prevalence and patient
desires
• Rest of literature mostly small, single-site case
series or trials – mostly in cancer patients
• Evidence for most practices is quite poor, often
anecdotal
Preparing for the last hours of life
• Regularly review the plan of care: prepare the
family
– Time course unpredictable
– Signs /symptoms to expect, management plan
• Any setting that permits privacy, pt goals
• Anticipate need for medications, equipment,
supplies
Predicting Death
• Most difficult and one of the most crucial parts of
our job in caring for people near end of life
• Allows patients / families to plan and make
decisions
• Important that consistent message from all
member of the team
The Reality of the Last Years of Life:
Death Is Not Predictable
100
CANCER
CHF, dementia
Function
80
60
40
20
0
Time
(slide courtesy of Joanne Lynn, MD, Rand Health)
Signs Associated with Actively
Dying Cancer Patients
• Patient becomes bedbound
• Patient is semi-comatose
• Patient able to take only sips of fluid
• Patient no longer able to take oral meds
J Ellersaw and C. Ward. Care of the dying patient:
the last hours or days of life. BMJ. 2003. 326:30-34.
Data from: Morita et al. A prospective study on the dying process in
terminally ill cancer patients. Am J Hosp Pall Care. 1998.
Multivariable Models for Very Sick Patients Cannot Predict
Time of Death Precisely (from SUPPORT)*
Median 2-month Survival Estimate
1.0
0.8
Congestive heart
failure
0.6
0.4
Lung cancer
0.2
0.0
7
6
5
4
Days before Death
3
*Lynn et al. New Horizons 1997;5:56-61.
2
1
Signs Associated with Actively
Dying in Patients with Heart Failure
• Previous admission with worsening heart failure
• No identifiable reversible precipitant
• Receiving optimum tolerated conventional drugs
• Deteriorating renal function
• Failure to respond within two to three days to appropriate
changes in diuretics or vasodilator drugs
J Ellersaw and C. Ward. Care of the dying patient:
the last hours or days of life. BMJ. 2003. 326:30-34.
Physiologic changes during the
dying process
•
•
•
•
•
•
•
Increasing weakness, fatigue
Decreasing appetite / fluid intake
Decreasing blood perfusion
Neurologic dysfunction
Pain
Loss of ability to close eyes
Respiratory changes: dry mouth
Conill et al. Symptom Prevalence in the Last Week of Life. Jnl Pain
Symptom Manaage. 1997
Weakness / fatigue
• Decreased ability to move: “withdrawing”
– Listen to their body – don’t need OOB to chair, PT
• Joint position fatigue: passive movement
– Rarely in last hrs – days
• Increased risk of pressure ulcers
– Balance preventing / causing disturbance
Decreasing appetite / food intake
• Fears: “giving in,” starvation
• Reminders
– listen to their body: it’s telling them what they need and can
“process”
– food may be nauseating
– risk of aspiration and vomitting
– clenched teeth express desires, control
• Help family find alternative ways to care
– What is calming to pt: music, touch, reading, story-telling
– Oral care
Decreasing fluid intake . . .
• Fears: dehydration, thirst
– One study examining thirst showed no relationship with BUN/Cr,
Na, osmolality, and ANP
• Remind families, caregivers
– dehydration does not cause distress
– dehydration may be protective (endorphins)
• Parenteral fluids may be harmful
– fluid overload, breathlessness, cough, secretions,
ascites, edema
Morita et al. Determinants of the sensation of thirst in terminally ill cancer patients. Supportive
Care Cancer, 2001.
Dry Mouth
• Dry mouth is one symptom which
increases near end of life – experienced
by > 60% of patients at end of life
• What do you do to treat dry mouth?
Morita et al. Determinants of the sensation of thirst in terminally ill cancer patients.
Supportive Care Cancer, 2001.
Oral Care:
• Teach RN and family
• Mouth swabs: NOT GLYCERIN
• Artificial saliva or water
• Petroleum jelly to lips q2h: NOT WATER
• Topical nystatin for oral candidiasis
Decreasing blood perfusion
•
•
•
•
Tachycardia, hypotension: stop monitoring
Peripheral cooling, cyanosis
Mottling of skin
Diminished urine output
Parenteral fluids will not reverse
Neurologic dysfunction
• Decreasing level of consciousness
• Communication with the unconscious patient
• Terminal delirium
• Changes in respiration
• Loss of ability to swallow,
• Loss of sphincter control
Communication with the
unconscious patient . . .
• Awareness > ability to respond
– Assume patient hears everything
• Create familiar, calming environment
• Include in conversations
– assure of presence, safety
• Touch, hold hand
• Give permission to die
Family Giving Permission to Die
“Patty and Jacob and Denise and I are all
here with you. We are going to take care
of each other, we will be OK. It’s OK to
go”
2 Roads to Death
• “Usual”
– Sleepy  Lethargic  Obtunded 
Comatose  Death
• “Difficult Road”
– Restless  Confused  Tremulous 
Hallucinations  Delirium  Myoclonic
Jerking  Seizures  Death
Delirium at End of Life
• Most prevalent symptom
• Studies report rates as high as 88% for
patients in final days
• May be frightening to patients and family,
“premature separation” for family
Kaplan-Meier plot of patient survival in 104 cancer patients
Prospective trial
of patients with
advanced cancer
admitted to
inpatient
palliative care
unit – cases and
control both
have advanced
cancer – delirium
diagnosis is at
any point during
admission.
Lawlor, P. G. et al. Arch Intern Med 2000;160:786-794.
Copyright restrictions may apply.
To work up or Not to work up?
• Delirium reversible in 50% of cases at end
of life
– i.e. not always curable, but treating some
underlying causes may improve other
symptoms (pain, urinary retention) and
decrease severity of delirium symptoms
• Pain, dyspnea, anxiety, ADE to medication
(atropine, benzo, anti-histamine)
Medications for Delirium at EOL
• Best known randomized controlled trial – looking at
chlorpromazine vs. lorazepam vs. haloperidol in AIDS
patients
• Admitted non-delirious patients and followed
prospectively for development of delirium
• Lorazepam arm stopped early because of increased
agitation
Breitbart et al. A double blind trial of haloperidol, chlorpromazine and lorazepam in the
treatment of delirium in hospitalized AIDS patients. Am J Psychiatry. 1996
Treating Terminal Delirium
• Family needs support, education
• Nonpharm management:
– Environment
• Decrease irritating stimuli; Vitals, monitors,
alarms, foley?, nebs? IV?
• Increase familiar / pleasant surroundings
– Voice, Re-orientation, touch
– Day – Night cycle maintenance
Treating Terminal Delirium
• Medical management
– Neuroleptics
• Start treatment EARLY
• Haloperidol: oral concentrate, IV, SC
• Haldol 0.5mg PO / IV q6h, titrate up as needed
– Sometimes add Benzodiazepine
• Ativan: dose finding (0.5mg IV) then prn or
standing / infusion
• Can have paradoxical effect, monitor closely
Death Rattle
• What is death rattle?
Death Rattle
•
What is death rattle?
•
Two types—
1.
Normal salivary / bronchial secretions which can’t
be expectorated due to weakness/fatigue/loss
reflexes
2.
Respiratory secretions due to underlying lung
pathology
#1 can be easily treated, #2 can’t be
DR Prevalence and Prediction
• High prevalence rates – 45-92% in the literature
• Studies indicate it is the most uncontrolled
“symptom”
• Sign that death is imminent –
– One retrospective study in Belgium of patients on pall
care unit
48% developed DR within 24 hours of death
76% developed DR within 48 hours of death
Wildiers and Menten. Death Ratle: Prevalence,
Prevention, and Treatment. JPSM. 2002.
23 (4): 310-317.
Ellershaw et al. Care of the Dying Patient: Setting Standards for
Symptom Control in the Last 48 hours of Life Jnl Pain Sympt
Manage. 2001.
Medications
• Scopolamine, Glycopyrrolate, Atropine,
Hyoscyamine
• Multiple trials for scopolamine vs.
glycopyrrolate
• None for atropine or hyoscyamine
Scopolamine vs. Glycopyrrolate
• Most trials done in Britain with both SQ
• Good evidence to show scopolamine is better
than glycopyrrolate both in terms of decreased
DR, rapid onset, favorable side effects – but
more expensive
Beck et al. A study comparing hyoscine hydrobromide and
glycopyrrolate in the treatment of death rattle. Palliative Medicine.
2001
Bennet et al. Using anti-muscarinic drugs in the management of death
rattle: evidence-based guidelines for palliative care.
When to Give Meds for DR
• Try repositioning, turn partially to side
• DO NOT give to prevent death rattle. Thickened
secretions more difficult to expectorate for pt with intact
reflexes
• Give when you begin to hear secretions accumulating.
Meds don’t remove secretions, just decrease rate of
production
• Explanation to family is key
– No evidence it is distressing to pts
– They are NOT DROWNING
Pain
• What is the prevalence at the end of life?
• Common management techniques
• Side effects to watch for
SUPPORT: Patients who Experienced
Moderate or Severe Pain at Least
Half of the Time Within Their Last Few Days
50%
SUPPORT Investigators. SUPPORT: A Controlled Trial to Improve Care for
Seriously Ill Hospitalized Patients. JAMA 1995.
Use of opioids at end of life
• Standard pain management:
– Dose finding
– Basal level of pain medication
– Episodic dosing (breakthrough / incident pain)
– Least invasive means of administration (never
IM)
Differences at end of life:
Specifics for prn
• Before changing soiled pads / linens
• Signs of pain: consistent grimacing, guarding
• When family feels pt looks “UNCOMFORTABLE”
Renal failure: accumulation of metabolites
• Preferred medications: dilaudid, fentanyl
• Dose reduction, discontinuation of basal
• Check for myoclonus (risk of seizure)
– Dose reduction, Opioid switching
– Add benzodiazepine
Other medications
• Acetaminophen: Mild pain
• Lidocaine (jelly with dressing, patch)
– Neuropathic pain
• Nsaids: Bone Pain
• Steroids:
– Capsular distension
– Decrease size of large mass
– Neuropathic pain
FEARS
Do opioids used in patients with
advanced disease hasten death?
• Secondary analysis of National Hospice Outcomes Project prospective cohort of patients in 13 facilities
– 725 patients who had at least one opioid dose change prior to death.
– Outcome = time until death after last dose change.
– No association between % dose change and time until death.
– There was an association between shorter survival and higher final
opioid dose (p=.010), but accounted for at most 10% of the variance.
Portenoy R. et al. Opioid use and survival at the end of life: a survey of a hospice
population. Journal Pain Symptom Management 2006: 32; 532-540.
Double-Effect
• It is legal and ethical to use a medication /
procedure that may decrease time to
death WHEN the primary intent of use is to
treat symptoms / improve QoL
Dyspnea Near End of Life
Prevalence anywhere from 22%-61%
• Can be difficult to know if respiratory
changes result from dyspnea, pain,
agitation, or response to changes in
metabolic acidosis
• Ask family “Do they look uncomfortable to
you?”
Management of Dyspnea
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•
•
•
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Etiology: fluid overload, obstruction by mass
Good air circulation, fans, cool room temp
Repositioning
Managing anxiety
Low dose opioids: starting ½ analgesic dose
– Modulation of sense of breathlessness (mu effect on
CNS processing of stimulation of J-recepters in lung)
– Titrate to . . . . ?
Opioids for Dyspnea
• Titrate to: “Comfortable breathing”
– Subjective report of pt
– Evaluation of observer / family
• Treatment of:
– Gasping respirations
– Accessory muscle use
– Appearance of “respiratory distress”
– Rapid shallow breathing
• Tachypnea is not necessarily dyspnea
“Hold for respiratory rate <6”
“Hold for respiratory rate <6”
• The process of dying involves cessation of
breathing
• Discuss with nurse and family:
– Patient is dying, eventually will stop breathing
– We are treating discomfort and shortness of
breath with opioids to prevent suffering during
process of dying.
“Terminal Sedation”
• Sedating patients at end of life is rarely needed
for control of symptoms.
– Explore symptoms, multi-modal management
– Expert palliative input
• Usually barbituate or benzo drip,
–
–
–
–
Start very low dose
Titrate to lowest dose that causes unconciousness
Do not stop other meds (pain meds)
After 48h, decrease sedation, attempt communication
to ensure symptoms were well managed.
Terminal Sedation
• One secondary data analysis of a trial of patients
admitted to an inpatient palliative care unit
examining use of medications for sedation
showed no difference in survival
Morita et al. Effects of high dose opioids and sedatives on
survival in terminally ill cancer patients. J Pain Sympt
Manage. 2001
Very Different From Euthanasia
• Goal is alleviation of symptoms, not hastening
death
• One secondary analysis of a trial of patients
admitted to an inpatient palliative care unit
examined use of medications for sedation demonstrated no difference in survival
Morita et al. Effects of high dose opioids and sedatives on
survival in terminally ill cancer patients. J Pain Sympt
Manage. 2001
Family as the Patient
5 Things Families Can Say to
Loved Ones Near Death
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•
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•
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Please forgive me.
I forgive you.
Thank you.
I love you.
Goodbye.
Attributed to Byock. The Four things that Matter Most.
New York, NY; Free Press; 2004.
Referral for Bereavement
Counseling
• Hospices offer bereavement counseling to
the larger community, not just the families
of patients under their care
Generalizations
• PROGNOSIS:
– Important for patient and family to achieve goals / closure
– Time-frame: hours-days, days-weeks
• PREPARATION:
– Prepare family for likely signs/sx, causes, and treatment
– Discuss plan with nursing staff / wider team (consultants)
– Stop inappropriate orders, document expected death
• SYMPTOMS:
– Only treat what is / appears to be disturbing to patient (or family
in some cases)
– Avoid treating one symptom and causing a new one (turning)
– Be explicit about the purpose of using each medication