palliative pearls: how to care for the dying patient

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Palliative Care

Clinical Pearls:How to care for the dying patientSuzana Makowski, MD MMM FACPOverviewQuick review of palliative careRecognizing hope at end-of-lifeHow to assess patientHow to manage symptomsFamily rating EOL care

40-70% die in pain60%suffer35% loose life savings$

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.4We dont know what to offerDo 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 daysYou mean you dont want us to intubate you? Not even a breathing machine (BiPAP)? Then what do you want us to do? -Things I have heard1-3 months prior to deathWithdrawal from outside worldWithdrawal from familyIncreased sleepingGradual decreases in eating

Hours to days prior to deathLower blood pressureChanges in heart rateTemperature fluctuationsIncreased perspirationBreathing fluctuationsSkin color changesFurther 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 CassellSkinIncreased risk for woundsRequesting turns, appropriate bedCheck skin integrityBarrier creamsWound careMoisturizer

IncontinenceLoss of sphincter controlConsider catheter part of goals of care discussionMeticulous skin care requires increased nursing checks, turns, etc.Puts patient at increased risk of skin breakdownDistressing to family

PainPrevalence: 50% moderate to severe painEvaluation of pain: verbal patient, vs. non-verbalPain vs. deliriumTreatment of pain:OpioidsNon-opioid analgesicsNon-pharmacologic interventions

BreathingAssess difference between dyspnea and normal changes in breathingDyspnea: subjective, historyNormal pattern changes: tidal volume, Cheyne-Stokes.Educate family and caregivers: address mythssuffocating Decrease in oxygen = suffering

BreathlessnessPrevalence: as high as 70%Which diagnoses?Treatment options:Opioid: morphine, oxycodone, hydromorphone, fentanyl*Chlorpromazine (Thorazine)-agonistNon-pharmacologic: fan, oxygen, stress-reduction (music, etc.)NauseaZofran is NOT the be-all-and-end-allKnow your pharmacology and pathophysiology!Eyes unable to closeCause: wasting of retro-orbital fat pad, causing orbit to fall within orbital socketTreatment:Educate family and nursingProvide moisture to conjunctiva:Artificial tearsLacrilube

Secretions death rattleAssociated with loss of ability to swallow and loss of gag.Gurgling, rattlingTreatment:Educate familyMedical intervention: Glycopyrrolate, hyoscine hydrobromide (Scopolamine)Non-pharmacologic: Repositioning, postural drainage.Suction is not effective

Assuring good symptom controlMedical 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 doseTerminal secretions: repositioning, stop artificial feeding and hydration, anticholinergics avoid suctioning why?Nausea: often due to dopamine receptor in chemoreceptor trigger zone haloperidol = metoclopromide - promotilityDelirium: common causes still apply and may be reversible! constipation, urinary retention, infection, pain, medicationsSome pearlsAvoid morphine in renal failure fentanyl, methadone, perhaps oxycodone preferablePsychological SymptomsDying is not primarily a medical condition, but a personally experienced, lived condition. William Bartholme, MD. 1997. Kansas City.

SummaryThere is more we can doAssure non-abandonmentComfort care is not just anything

Sir William Osler:

Eric Cassell: A good physician treats the disease; a great physician treats the patient who has the disease.THE obligation of physicians to relieve human suffering stretches back into antiquity. Despite this fact, little attention is explicitly given to the problem of suffering in medical education, research, or practice. I will begin by focusing on a modern paradox: Even in the best settings and with the best physicians, it is not uncommon for suffering to occur not only during the course of a disease but also as a result of its treatment. 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.19Thank you

Thanks to many, including: (Sept 1, 2009), my friends and familyHow to learn moreEPEC (Education on Palliative & End-of-Life Care)Lois Green Learning Community www.loisgreenlearningcommunity.orgGet Palliative: www.getpalliativecare.orgPallimed Connect


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