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.
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.
How to care for the dying
Clinical Pearls:How to care for the dying patientSuzana Makowski, MD MMM FACP
• Quick review of palliative care• Recognizing hope at end-of-life• How to assess patient• How to manage symptomsOverview
Wanting more pain relief More physician contact Wanting more respectFamily rating EOL care
• 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 heardWe don’t know what to offer
• Withdrawal from outside world • Withdrawal from family • Increased sleeping • Gradual decreases in eating1-3 months prior to death
• Lower blood pressure• Changes in heart rate • The relief of suffering, it• Temperature fluctuations would appear, is considered one of the primary ends of• Increased perspiration medicine by patients and lay• Breathing fluctuations persons, but not by the medical profession.• Skin color changes• Further withdrawal, -Eric Cassell perhaps confusionHours to days prior to death
• 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 familyIncontinence
• 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 Pain
• 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 = sufferingBreathing
• 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.)Breathlessness
• Zofran is NOT the be-all-and-end-all• Know your pharmacology and pathophysiology!Nausea
• 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 • LacrilubeEyes – unable to close
• 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 effectiveSecretions “death rattle”
• Medical management you have been prescribing still applies. • Opioids may be helpful for dyspnea and painAvoid morphine in renal failure – fentanyl, methadone, perhaps oxycodone preferable • 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 Assuring good symptom control Some pearls
Psychological Symptoms“Dying is not primarily a medical condition, but a personally experienced, lived condition.” William Bartholme, MD. 1997. Kansas City.
• There is more we can do• Assure non-abandonment• Comfort care is not “just” anythingSummary