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Clinical Pearls:
How to care for the dying patient
Suzana Makowski, MD MMM FACP
Overview
• Quick review of palliative care
• Recognizing hope at end-of-life
• How to assess patient
• How to manage symptoms
Family rating EOL care
WantingWanting
more painmore pain
reliefrelief
MoreMore
physicianphysician
contactcontact
WantingWanting
moremore
respectrespect
40-70%
die in
pain
60%
suffer
35%loose life
savings
We don’t know what to offer
• Do you want us to do everything, or just…?
• If your heart stops, do you want us to use chest
compressions to get it started again or to keep you
comfortable?
• Your choice is either to have this PEG and maybe live for
months, or to not have the PEG and go to hospice and die
in a few days…
• You mean you don’t want us to intubate you? Not even a
breathing machine (BiPAP)? Then what do you want us
to do?
-Things I have heard
1-3 months prior to death
• Withdrawal from
outside world
• Withdrawal from
family
• Increased sleeping
• Gradual decreases
in eating
Hours to days prior to death
• Lower blood pressure
• Changes in heart rate
• Temperature fluctuations
• Increased perspiration
• Breathing fluctuations
• Skin color changes
• Further withdrawal,
perhaps confusion
• The relief of suffering, it
would appear, is considered
one of the primary ends of
medicine by patients and lay
persons, but not by the
medical profession.
-Eric Cassell
Skin
• Increased risk for wounds
• Requesting turns, appropriate bed
• Check skin integrity
• Barrier creams
• Wound care
• Moisturizer
Incontinence
• Loss of sphincter control
• Consider catheter – part of goals of care
discussion
• Meticulous skin care – requires increased nursing
checks, turns, etc.
• Puts patient at increased risk of skin breakdown
• Distressing to family
Pain
• Prevalence: 50%
moderate to severe
pain
• Evaluation of pain:
verbal patient, vs.
non-verbal
• Pain vs. delirium
• Treatment of pain:
• Opioids
• Non-opioid
analgesics
• Non-
pharmacologic
interventions
Breathing
• Assess difference between dyspnea
and normal changes in breathing
• Dyspnea: subjective, history
• Normal pattern changes: Δ tidal
volume, Cheyne-Stokes.
• Educate family and caregivers:
address myths
• “suffocating”
• Decrease in oxygen = suffering
Breathlessness
• Prevalence: as high as 70%
• Which diagnoses?
• Treatment options:
• Opioid: morphine, oxycodone, hydromorphone, fentanyl*
• Chlorpromazine (Thorazine)
• β-agonist
• Non-pharmacologic: fan, oxygen, stress-reduction (music,
etc.)
Nausea
• Zofran is NOT the be-all-and-end-all
• Know your pharmacology and pathophysiology!
Eyes – unable to close
• Cause: wasting of retro-orbital fat pad, causing orbit to
fall within orbital socket
• Treatment:
• Educate family and nursing
• Provide moisture to conjunctiva:
• Artificial tears
• Lacrilube
Secretions “death rattle”
• Associated with loss of ability to swallow and loss of gag.
• Gurgling, rattling
• Treatment:
• Educate family
• Medical intervention: Glycopyrrolate, hyoscine
hydrobromide (Scopolamine)
• Non-pharmacologic: Repositioning, postural drainage.
• Suction is not effective
Assuring good symptom control
• Medical management you have been prescribing still applies.
• Opioids may be helpful for dyspnea and pain
• Constipation is the opioid only side effect one does not gain
tolerance to give pro-motility (softener not enough)
• Respiratory suppression is due to overdose, not appropriate dose
• Terminal secretions: repositioning, stop artificial feeding and
hydration, anticholinergics – avoid suctioning  why?
• Nausea: often due to dopamine receptor in chemoreceptor
trigger zone haloperidol = metoclopromide - promotility
• Delirium: common causes still apply and may be reversible! –
constipation, urinary retention, infection, pain, medications
Some pearls
Avoid morphine in renal failure – fentanyl, methadone, perhaps oxycodone preferable
Psychological Symptoms
“Dying is not primarily a medical condition, but a personally experienced, lived
condition.” William Bartholme, MD. 1997. Kansas City.
Summary
• There is more we can do
• Assure non-abandonment
• Comfort care is not “just”
anything
• Sir William Osler:
• Eric Cassell:
“
“ “
“
Thank you
Thanks to many, including:
www.life.com (Sept 1, 2009),
my friends and family
How to learn more
• EPEC (Education on Palliative & End-of-Life Care)
• Lois Green Learning Community
www.loisgreenlearningcommunity.org
• Get Palliative: www.getpalliativecare.org
• Pallimed Connect

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Clinical Pearls for Caring for Dying Patients

  • 1. Clinical Pearls: How to care for the dying patient Suzana Makowski, MD MMM FACP
  • 2. Overview • Quick review of palliative care • Recognizing hope at end-of-life • How to assess patient • How to manage symptoms
  • 3. Family rating EOL care WantingWanting more painmore pain reliefrelief MoreMore physicianphysician contactcontact WantingWanting moremore respectrespect
  • 5. We don’t know what to offer • Do you want us to do everything, or just…? • If your heart stops, do you want us to use chest compressions to get it started again or to keep you comfortable? • Your choice is either to have this PEG and maybe live for months, or to not have the PEG and go to hospice and die in a few days… • You mean you don’t want us to intubate you? Not even a breathing machine (BiPAP)? Then what do you want us to do? -Things I have heard
  • 6. 1-3 months prior to death • Withdrawal from outside world • Withdrawal from family • Increased sleeping • Gradual decreases in eating
  • 7. Hours to days prior to death • Lower blood pressure • Changes in heart rate • Temperature fluctuations • Increased perspiration • Breathing fluctuations • Skin color changes • Further withdrawal, perhaps confusion • The relief of suffering, it would appear, is considered one of the primary ends of medicine by patients and lay persons, but not by the medical profession. -Eric Cassell
  • 8. Skin • Increased risk for wounds • Requesting turns, appropriate bed • Check skin integrity • Barrier creams • Wound care • Moisturizer
  • 9. Incontinence • Loss of sphincter control • Consider catheter – part of goals of care discussion • Meticulous skin care – requires increased nursing checks, turns, etc. • Puts patient at increased risk of skin breakdown • Distressing to family
  • 10. Pain • Prevalence: 50% moderate to severe pain • Evaluation of pain: verbal patient, vs. non-verbal • Pain vs. delirium • Treatment of pain: • Opioids • Non-opioid analgesics • Non- pharmacologic interventions
  • 11. Breathing • Assess difference between dyspnea and normal changes in breathing • Dyspnea: subjective, history • Normal pattern changes: Δ tidal volume, Cheyne-Stokes. • Educate family and caregivers: address myths • “suffocating” • Decrease in oxygen = suffering
  • 12. Breathlessness • Prevalence: as high as 70% • Which diagnoses? • Treatment options: • Opioid: morphine, oxycodone, hydromorphone, fentanyl* • Chlorpromazine (Thorazine) • β-agonist • Non-pharmacologic: fan, oxygen, stress-reduction (music, etc.)
  • 13. Nausea • Zofran is NOT the be-all-and-end-all • Know your pharmacology and pathophysiology!
  • 14. Eyes – unable to close • Cause: wasting of retro-orbital fat pad, causing orbit to fall within orbital socket • Treatment: • Educate family and nursing • Provide moisture to conjunctiva: • Artificial tears • Lacrilube
  • 15. Secretions “death rattle” • Associated with loss of ability to swallow and loss of gag. • Gurgling, rattling • Treatment: • Educate family • Medical intervention: Glycopyrrolate, hyoscine hydrobromide (Scopolamine) • Non-pharmacologic: Repositioning, postural drainage. • Suction is not effective
  • 16. Assuring good symptom control • Medical management you have been prescribing still applies. • Opioids may be helpful for dyspnea and pain • Constipation is the opioid only side effect one does not gain tolerance to give pro-motility (softener not enough) • Respiratory suppression is due to overdose, not appropriate dose • Terminal secretions: repositioning, stop artificial feeding and hydration, anticholinergics – avoid suctioning  why? • Nausea: often due to dopamine receptor in chemoreceptor trigger zone haloperidol = metoclopromide - promotility • Delirium: common causes still apply and may be reversible! – constipation, urinary retention, infection, pain, medications Some pearls Avoid morphine in renal failure – fentanyl, methadone, perhaps oxycodone preferable
  • 17. Psychological Symptoms “Dying is not primarily a medical condition, but a personally experienced, lived condition.” William Bartholme, MD. 1997. Kansas City.
  • 18. Summary • There is more we can do • Assure non-abandonment • Comfort care is not “just” anything
  • 19. • Sir William Osler: • Eric Cassell: “ “ “ “
  • 20. Thank you Thanks to many, including: www.life.com (Sept 1, 2009), my friends and family
  • 21. How to learn more • EPEC (Education on Palliative & End-of-Life Care) • Lois Green Learning Community www.loisgreenlearningcommunity.org • Get Palliative: www.getpalliativecare.org • Pallimed Connect

Editor's Notes

  1. About 100 years ago, when physicians were at a very critical historical moment and they realized that their treatments were relatively ineffective, prognosis had incredible salience. Patients came to doctors and doctors cultivated the ability to predict what would happen. But as doctors acquired more effective treatments, the impetus to prognosticate declined. There is this presumption that disease will be treated and eliminated. So why bother to predict what will happen? The disease is going to get better because doctors are so powerful and so knowledgeable and so effective. A lack of attention to prognostication can result in patients' dying badly. For instance, 40 to 70 percent of Americans die in pain, 80 percent die in institutions rather than at home as many prefer, 60 percent of Americans have significant suffering when they die. About 35 percent of families lose all or most of their life savings in the course of caring for the person who's dying. And I believe that the poor state of prognostic knowledge and prognostic practice is a factor that is contributing to these bad outcomes. If patients and doctors knew that the patient was dying, they might institute interventions like stopping painful treatment, like having better financial planning that would maybe mitigate some of those bad outcomes. Do doctors know a patient's prognosis and avoid telling it, or do doctors themselves not know what a patient's prognosis is? There is an absence and avoidance of prognosis in the profession. Less than a quarter of textbook entries have any information about prognosis, and only 4 percent of published research is on prognosis. How well do doctors do in predicting a patient's outcome? A. I just published a study a few months ago in The British Medical Journal in which we looked at physicians' prognoses in 500 terminally ill patients. We found that with a very liberal standard of accuracy only 20 percent of the prognoses were accurate. On average, physicians overestimate survival by a factor of 5.3 And this is not what they told the patients; it's what they told us. They'd say, ''I think this patient is going to live for four months.'' And they died within a week.
  2. Everybody dies. Cancer continues to be one of the leading causes of death. Good symptom management, coordination of care and help patients live better and longer. The obligation of the physician is to alleviate suffering.