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Palliative Care. “How one might live before they die” Melissa Matulis, MD. . Cultural Attitudes. In the beginning, man did not fear death but instead accepted it as a natural process.

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Palliative Care

“How one might live before they die”

Melissa Matulis, MD..


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Cultural Attitudes

  • In the beginning, man did not fear death but instead accepted it as a natural process.

  • The Middle Ages brought about a change in attitude from death as ordinary and accepted to death as something shameful.

  • In the 1930’s, historians noted that people were no longer dying at home surrounded by friends and family, but in hospitals or nursing homes alone and isolated.

  • Over the last 40 years, our society has become increasingly influenced by new technology that has led to a more scientific and less humanistic approach to caring for people.

  • The “art of medicine” has been replaced by the “science of medicine”.


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History of Palliative Care

  • In the early 1960’s and continuing into the 70’s, the concept of “death awareness” developed and palliative care was born.

  • Palliative care had its origins in the hospice movement which began in England in 1967.

  • The interest in the terminally ill in the United States was sparked by the book On Death and Dying (1969) by Elisabeth Kubler-Ross.


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Definition of Palliative Care

  • Palliative Care is defined by the World Health Organization as “the active total care of patients whose disease is not responsive to curative treatment.”

  • This definition encompasses several principles:

    1. It affirms life and regards dying as a normal process.

    2. It neither hastens nor postpones death.

    3. It provides relief from pain and other distressing symptoms.

    4. It offers a support system to help patients live as actively as

    possible until death.

    5. It integrates the psychological and spiritual aspects of patient care.

    6. It offers a support system to help the family cope during the

    patient’s illness and in their own bereavement.


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Influences changing our attitudes

1. Our aging population

  • by 2030, 21% of our population will be age 65 and older

  • 8.8 million people will be over the age of 85

    2. Emergence of patient autonomy and informed consent

    3. The Right-to-Die Movement

    4. The high cost of dying


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SUPPORT Trial

  • In JAMA November, 1995, investigators published a controlled trial to improve care for seriously ill, hospitalized patients entitled The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT).


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SUPPORT Trial

  • SUPPORT was a study of symptom experience, decision-making, and prognosis in hospitalized adults with one or more of 9 high mortality diseases.

  • Patients were required to meet defined severity criteria to establish a 6-mos mortality rate of 47%.



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SUPPORT Trial

  • RESULTS:

    • Phase I

      • 47% of physicians knew when their patients did not want CPR.

      • 46% of DNR orders were written within 2 days of death.

      • 38% of patients who died spent at least 10 days in an ICU.

      • For 50% of conscience patients who died in the hospital, family reported moderate to severe pain at least half the time.


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SUPPORT Trial

  • In Phase 2, authors hypothesized that increased communication and understanding of prognosis and preferences would result in earlier tx decisions, decreased time in undesirable states before death, and a decrease in hospital resource use.


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SUPPORT Trial

  • The intervention physicians received estimates of likelihood of 6-mos survival for every day up to 6-mos, outcomes of CPR, and functional disability at 2-mos.

  • A specially trained clinical nurse facilitated communication between physician, patient, and family using questionnaires.


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SUPPORT Trial

  • RESULTS:

    • Phase 2

      • Patients experienced no improvement in patient-physician communication.

      • No improvement in incidence of timing of written DNR orders. (AR 1.02, CI 0.90-1.15)

      • No change in physician’s knowledge of the patients’ preferences not to be resuscitated. (AR 1.22, CI 0.99-1.49)


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SUPPORT Trial

  • RESULTS:

    • Phase 2

      • No difference in the number of days spent in the ICU, comatose, or receiving mechanical ventilation before death. (AR 0.97, CI 0.87-1.07)

      • No change in level of reported pain. (AR 1.15, CI 1.00-1.33)

      • No reduction in the use of hospital resources. (AR 1.05, CI 0.99-1.12)


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Barriers to Palliative Care

  • Advance Directives

  • Confusion of the “Dying Role” and the “Sick Role”

  • Lack of Physician Education


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Physician Education

  • Archives of Internal Medicine, 1995

    • only 26% of residency programs offered a course on end-of-life care

    • 15% had no formal training at all

  • New England Journal of Medicine, 1997

    • 38% of residents felt comfortable educating families about the dying process

    • 32% felt comfortable responding to patients who request assistance in dying

  • Academic Medicine, 1991

    • only11% of medical schools offered full-term courses on death education


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Barriers to Palliative Care

  • Advance Directives

  • Confusion of the “Dying Role” and the “Sick Role”

  • Lack of Physician Education

  • The Health Care Delivery System

  • Narcotic Distribution Laws


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Role of the PCP

  • Comprehensive care of the patient AND the family.

  • Changing the focus of care from cure to palliation.

  • Prognostic Guidelines

    • National Hospice Organization

    • Fox et al., JAMA 1999


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Fox et al.--JAMA 1999

  • Fox et al developed a study to evaluate the accuracy of the prognostic criteria in patients dying from COPD, CHF, and ESLD by developing a validation study.

  • Using the NHO guidelines and the SUPPORT trial population, they grouped 7 prognostic criteria into 3 different combinations to identify those patients with a survival prognosis of 6-mos or less.



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Fox et al. (con’t)

COMBINATION CRITERIA

  • Broad Inclusion: 1 of the 7 criteria

  • Intermediate Inclusion: 3 of the 7 criteria

  • Narrow Inclusion: 5 of the 7 criteria

  • for example, if one had significant weight loss, low albumin, and cor pulmonale (3 criteria), then he would be included in the broad and intermediate groups, but not in the narrow.





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Fox et al., JAMA 1999--Results

  • Each of the combination criteria had a high specificity, meaning they excluded those who lived over 6 mos.


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Fox et al., JAMA 1999--Results

  • However, the sensitivities were severely inadequate, meaning the criteria failed to identify those they intended--the dying pts whose prognosis was indeed < 6 mos.


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Fox et al., JAMA 1999--Results

  • Actual discharge to hospice was the most powerful predictor of death within 6-mos.


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Role of the PCP

  • Comprehensive care of the patient AND the family.

  • Changing the focus of care from cure to palliation.

  • Prognostic Guidelines

    • National Hospice Organization

    • Fox et al., JAMA 1999


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“Breaking the News”

Patients want:

  • Physicians to be truthful.

  • To be told in person with time to ask questions.

  • Assurance they will not be abandoned.

  • A promise of optimal pain control.

  • Access to appropriate resources and counseling.

  • Ongoing communication with their physician.


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Role of the PCP

  • Comprehensive care of the patient AND the family.

  • Changing the focus of care from cure to palliation.

  • Prognostic Guidelines

    • National Hospice Organization

    • Fox et al., JAMA 1999

  • “Breaking the news”


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Bereavement

  • Patients and families begin the mourning process at the diagnosis of life-threatening disease. This is termed “Anticipatory grief”.

  • Kubler-Ross’ book On Death and Dying identifies 5 stages to describe the experience of dying: denial, anger, bargaining, depression, and acceptance.

  • Spousal loss is associated with increased morbidity and mortality in the survivor, therefore bereavement counseling should continue for 1 year after the death.


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Role of the PCP

  • Comprehensive care of the patient AND the family.

  • Changing the focus of care from cure to palliation.

  • Prognostic Guidelines

    • National Hospice Organization

    • Fox et al., JAMA 1999

  • “Breaking the news”

  • Bereavement


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Active Care of the Dying

  • The physician’s primary goal is to assist the patient in achieving relief of emotional pain and to increase physical comfort.

  • To achieve this goal the physician must work with the patient and family to achieve a plan of care.


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Active Care of the Dying

  • The Plan of Care addresses:

    • pain control

    • symptom management

    • spiritual needs

  • social needs

  • wishes for interventions at the time of death

  • a method to meet these goals


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Active Care of the Dying

  • Pulmonary Symptoms

    • Dyspnea

    • “The Death Rattle”

    • Cough


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Active Care of the Dying

  • Pulmonary Symptoms - Dyspnea

    • Is there a reversible condition present?

    • Using low dose narcotics such as morphine to reduce “air hunger”.

  • Is there an anxiety component?

  • The use of corticosteriods

  • What about bedside fans, oxygen, mucolytics, or sedation?


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Active Care of the Dying

  • Pulmonary Symptoms - “The Death Rattle”

    • Drying agents such as atropine or scopolamine desiccate pulmonary secretions and relax the smooth muscle of the tracheobronchial tree.

    • Gentle suctioning.


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Active Care of the Dying

  • Pulmonary Symptoms - Cough

    • Is there an underlying cause?

    • The use of opioids.


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Active Care of the Dying

  • Gastrointestinal Symptoms

    • Nausea and Vomiting

    • Constipation and Ileus

    • Anorexia

    • Xerostomia


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Active Care of the Dying

GI Symptoms - Nausea and Vomiting

The Four Pathways to the vomiting center:

  • The Chemotrigger Zone

  • Peripheral Afferent Nerves

  • Cortical Structures

  • Vestibular Apparatus


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Active Care of the Dying

  • GI Symptoms - Nausea and Vomiting

  • The Four Pathways:

  • The Chemotrigger Zone (CRZ)

    • activated when offending agents such as opioids, NSAIDs, or uremic toxins cross the blood-brain barrier.

    • treatment includes removing the noxious agent, reversing pathology, or blocking the CRZ dopamine, acetylcholine, and/or histamine receptors.


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Active Care of the Dying

  • GI Symptoms - Nausea and Vomiting

  • The Four Pathways:

    • Peripheral Afferent Nerves

      • Stimulation of these nerves along the GI tract by mucosal irritation, viscous enlargement, or pain from irritation of other areas such as liver or pelvic organs.

      • Treatments include H2 blockers, laxatives or prokinetics, steroids or opioids.


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Active Care of the Dying

  • GI Symptoms - Nausea and Vomiting

  • The Four Pathways:

    • Cortical Structures

      • This pathway is associated with increased intracranial pressure as well as anxiety and preconditioning.

      • Treatment includes steroids and benzodiazepines


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Active Care of the Dying

  • GI Symptoms - Nausea and Vomiting

  • The Four Pathways:

    • Vestibular Apparatus

      • Associated with movement and vertigo

      • Treatment includes anticholinergic and antihistaminic agents as well as steroids for increased intracranial pressure.


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Active Care of the Dying

  • GI Symptoms - Constipation

    • Constipation is a common and predictable symptom secondary to the widespread use of narcotics in the dying patient.

    • The physician must prescribe a regular bowel regime with the institution of narcotics.

      • Bulk laxatives, stool softeners, as well as gut stimulants

      • If possible, adequate fluid intake and high fiber diet.


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Active Care of the Dying

  • GI Symptoms - Constipation

  • Impaction can also present as severe constipation or overflow incontinence with abdominal pain mimicking bowel obstruction.

  • Treatment includes a softening and stimulating suppository. Occasionally digital disimpaction is required.


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Active Care of the Dying

  • GI Symptoms - Constipation

  • Remember if a patient has significant nausea and vomiting with or without concomitant constipation, the diagnosis of ileus or bowel obstruction should be considered.

  • Patients can be managed using somatostatin instead of nasogastric suctioning.


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Active Care of the Dying

  • GI Symptoms - Anorexia

  • Anorexia can be very distressing to patient’s family for fear of their loved one “starving to death.”

  • Furthermore, many physicians are uncomfortable not providing nutrition and hydration to the terminally ill.


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Active Care of the Dying

  • GI Symptoms - Anorexia

  • Nutrition and hydration remain controversial, but recent information supports the conclusion that tube feeding or intravenous feeding seldom achieves the intended medical goal.

  • Furthermore, rather than prevent suffering, they can cause it.


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Active Care of the Dying

  • GI Symptoms - Anorexia

  • McCann et al. published a study in JAMA 1994 that found:

    • 63% of patients dying of cancer never experienced hunger

    • the 34% that did experience hunger only needed small amounts of food for alleviation


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Active Care of the Dying

  • GI Symptoms - Anorexia

  • McCann et al. also that found:

- 62% experienced either no thirst or thirst only initially in their terminal illness and received relief with sips of water, ice chips, and mouth care.


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Active Care of the Dying

  • GI Symptoms - Anorexia

  • McCann et al. concluded that food and fluids beyond specific request of the patient may do little to improve comfort in the terminally ill.


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Active Care of the Dying

  • GI Symptoms - Anorexia

  • The data collected over the past decade suggest that tube feeding does not reduce aspiration risk, prolong life, promote comfort, or reduce suffering.


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Active Care of the Dying

  • GI Symptoms - Anorexia

  • Many authors do not advocate the use of fluids without nutrition. Fluids can cause harm by prolonging the dying process, by increasing pulmonary secretions, and by increasing urine production.


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Active Care of the Dying

  • GI Symptoms - Xerostomia

    • Dry mouth is another common problem in terminally ill patients and can be exacerbated by malnutrition and anorexia.

    • Treatment includes good oral hygiene, sips of water, saliva substitutes, and pilocarpine.

    • Also avoid giving the patient alcohol-containing mouthwash and caffeine.


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Active Care of the Dying

  • Dermatologic Symptoms

    • Cleanliness

    • Pressure ulcers

    • Pruritus


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Active Care of the Dying

  • Dermatologic Symptoms

  • Cleanliness

    • Adequate skin care improves interaction with family and friends, prevents skin breakdown, and enhances human dignity.

    • The best management is the use of diapers, frequent bathing, and changing of clothing. This is more comfortable and dignified than instrumentation or medication.


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Active Care of the Dying

  • Dermatologic Symptoms

  • Pressure ulcers

    • Many factors that predispose the dying patient to pressure ulcers are unavoidable.

    • Prevention with frequent turning, good hygiene, and an appropriate bed is important.

    • If ulcers do develop treatment includes local dressing changes and analgesic medications rather than surgical intervention.


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Active care of the Dying

  • Dermatologic Symptoms

  • Pruritus

    • Pruritus may be caused by many factors such as excessive skin washing, drug reactions, or liver dysfunction.

    • Treatment includes anesthetics, antihistamines, and lotions. If these remedies do not provide relief, the PCP can consider treating the underlying condition or sedating the patient.


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Active Care of the Dying

  • Psychological Symptoms

    • Anxiety

    • Depression

    • Delirium

    • Social Needs

    • Spiritual Needs


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Active Care of the Dying

  • Psychological Symptoms

  • The management of depression and anxiety in the terminally ill is of paramount importance to improve quality of life.

  • Treatment of anxiety includes drugs from the benzodiazepine, antidepressant, antihistimine, and opioid classes. Remember to rule out withdrawal as a cause of patient’s anxiety.


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Active Care of the Dying

  • Psychological Symptoms

  • Depression is best managed by first providing optimal pain control. Then, use the patient interview to make the diagnosis.

  • Many authors recommend using SSRIs, tricyclic antidepressants and/or psychostimulants, as well as counseling.


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Active Care of the Dying

  • Psychological Symptoms

  • Delirium is a common symptom experienced by the dying patient and is often multifactorial and difficult to correct.

  • Haloperidol is the most often recommended treatment.

  • Some patients suffer from “terminal delirium” which is treated with sedation using methotrimepazine or midazolam.


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Active Care of the Dying

  • Psychological Symptoms

  • It is important to address patient’s social needs by providing contact with social services that can aid the family with hospital equipment and home health services.

  • Many will also benefit from contact with clergy or counselors to aid them as they cope with death and dying and work to resolve issues with family and friends. (The Psychological Process of Dying)


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Active Care of the Dying

  • Pain Control

    • One of the most vital goals of the physician is optimal pain prevention for the terminally ill.

    • Singer et al. asked patients dying of ESRD and AIDS as well as residents of a long-term care facility to describe quality end of life care, five domains were identified. The first of these five domains was to receive adequate pain and symptom management.


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Active Care of the Dying

  • Barriers to Adequate Pain Control:

    • The patient’s fear of sedation with adequate pain control.

    • Excessive fear of addiction to narcotics.

    • Some physicians feel the patient is a poor judge of his own pain.


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Active Care of the Dying

  • Barriers to Adequate Pain Control:

    • Scrutiny by drug regulators.

    • Physicians fear that adequate pain control will inadvertently hastens the patient’s death. They are unaware of the principle of “double effect.”

    • The concept of “total pain.”


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Active Care of the Dying

  • The concept of “total pain”

    • Desbiens et al. performed a prospective, cohort study using the pain data collected in the SUPPORT trial.

    • They found that patients with more dependencies in activities of daily living, more depression, more anxiety, and poor quality of life reportedmore pain.


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Active Care of the Dying

  • The concept of “total pain”

  • Desbiens et al also found that patients with more severe pain, greater anxiety and/or depression, altered mental status, and lower income reported a dissatisfaction with their pain control.

  • This study supports the need to treat all aspects of pain.


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Active Care of the Dying

  • The Types of Pain:

    • Visceral pain

    • Somatic pain

    • Neuropathic pain


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Active Care of the Dying

  • The Assessment of Pain:

    • Numeric scales, visual analog scales, descriptive pain intensity scales, and physical signs in the nonverbal patient are all effective means to assess pain.

    • Ratings will need to be made several times aday over many days to establish a patient’s initial needs. This must be followed by periodic assessment for changing needs.


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Active Care of the Dying

  • Pain Control

  • Orders for managing chronic pain in dying patients should include:

    • an approach to preventing recurrence

    • a plan for breakthrough pain

    • attention to side effects

    • schedule for reassessment


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Active Care of the Dying

  • Pain Control - the “Cancer Pain Ladder”

    • The original ladder had three rungs but recently the second rung has been eliminated.

    • The bottom rung represents first line therapy with NSAIDs and aspirin.

    • The second rung previously represented the combination analgesics.

    • The top rung deals with moderate to severe pain using opioid analgesics.


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Active Care of the Dying

  • Pain Control - the “Cancer Pain Ladder”

  • The proper dose of opioid analgesic is that which provides relief of pain without causing unacceptable side effects.

  • Morphine is the gold standard.

  • Other choices are oxycodone and transdermal or the lozenge form of fentanyl.


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Active Care of the Dying

  • Pain Control - the “Cancer Pain Ladder”

  • Proper dosing includes a long-acting agent with twice daily dosing along with one-third of the 24 hour dose to be given every 2-4 hours as needed.

  • If over the next 24 hours, the patient requires more than three rescue doses, the baseline should be increased and the rescue dose readjusted.


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Active Care of the Dying

  • Pain Control - the “Cancer Pain Ladder”

  • Intravenous morphine for the first 24 hours is another option to determine a patient’s need.

  • The use of conversion tables will aid in the task of converting to an oral long-acting agent. (see handout)


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Active Care of the Dying

  • Pain Control - Adjuvant Measures

    • Pharmacologic examples include anxiolytics, anticonvulsants, and antidepressants.

    • Nonpharmacologic examples are neurostimulation, acupuncture, massage, and behavior therapy using imagery, aromatherapy, biofeedback, and support groups.

    • Last resort measures include nerve block, surgical destruction, or radiation therapy.


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Active Care of the Dying

  • Pain Control - Neuropathic pain

    • Treatment agents are prescribed in an attempt to normalize conduction within the nerve and thereby decrease the pain.

    • Suggested pharmacologic measures include antidepressants, anticonvulsants, local anesthetics, and steroids. Some patients will need the addition of opioids.


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Active Care of the Dying

  • Pain Control

  • Remember to treat the side effects of NSAIDs and opioid analgesics.

  • Addiction is rare. Dying patients rarely exhibit true drug-seekingbehavior, but unfortunately, they often demonstrate pain- relief seekingbehavior.


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Palliative Care

  • The Hospice Movement

    • The history:

      • England, 1967 - St. Christopher’s Hospice founded by Dr. Cicely Saunders.

      • America, 1974 - first hospice funded by the NCI opened in New Haven, Connecticut.

      • The National Hospice Organization established in 1977.


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Palliative Care

  • The Hospice Philosophy

    • Death is a natural part of the life cycle and when it is inevitable, hospice will neither seek to hasten nor postpone it.

    • Pain relief and symptom management are clinical goals.

    • Psychological and spiritual pain, as well as physical pain are addressed by an interdisciplinary team.


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Palliative Care

  • The Hospice Philosophy

  • Patients, family and loved ones are the unit of care.

  • Bereavement care is critical to supporting surviving family and friends.

  • Care is provided 24 hours a day, seven days a week, regardless of the ability to pay.


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Palliative Care

  • The Hospice Philosophy

  • Evidence to support the hospice philosophy is mixed.

    • The National Hospice Study

    • A secondary analysis of the National Hospice Study

    • Kane et al.

  • These studies demonstrate that caregiver and patient satisfaction is at least as good, and oftensuperior to that of conventional care.


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Palliative Care

  • The Cost-Effectiveness of Hospice Care

    • Studies to demonstrate the monetary advantages of hospice care are also mixed.

      • The National Hospice Study

      • Kane et al.

    • Current research supports hospice care as cost-saving in the last month of life but overall the effect on cost appears to be weakly positive.

    • There is no evidence that hospice adds to costs.


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Palliative Care

  • The TEFRA Legislation (1982):

    • Patient eligibility requirement of physician-certified prognosis of six months or less.

    • Capitated reimbursement.

    • A limitation of 210 days coverage-no more than 20% spent in inpatient setting.

    • Hospices must provide home nursing and inpatient services.


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Palliative Care

  • The TEFRA Legislation:

  • The hospice interdisciplinary team must maintain financial and clinical control of all patient care in both home and inpatient settings.

  • Ministerial, bereavement, and volunteer services are not directly reimbursable.

  • HCFA has established four levels of care that determine the rate of reimbursement.


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    Palliative Care

    • The Barriers to Hospice Referral

      • The certification of terminal illness-prognosis of six months or less.

        • Studies show that the overall survival after hospice referral is short which may suggest that they have received unnecessary aggressive care or inadequate use of a desired type of terminal care for a long period of time prior to referral.

      • The capitated form of Medicare payment.

        • Influences enrollment and services offered.


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    Palliative Care

    • The Barriers to Hospice Referral:

    It is important to remember when trying to determine the cost/benefit/limits on hospice care, that we all will eventually be part of the dying and want dignity and comfort despite the cost.


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    Palliative Care

    • In conclusion:

      • Dr. Cicely Saunders summed the needs of the dying with the words “Watch with me.” This comment does not mean “take away” or “understand” but instructs the physician to “Be there.”


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