Palliative Care

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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 1930s, 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• The art of medicine has been replaced by the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 1960s and continuing into the 70s,
  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
• patients 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
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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 physicians 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
• only 11 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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More on Fox et al.
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Fox et al. (cont)

• 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. (cont)
22
SUPPORT Data Prognostic Model
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Operating Characteristic Comparisons
24
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 lt 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 physicians 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 patients
  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 patients 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 patients 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 patients 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 patients 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 reported
  more 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 a day
  over many days to establish a patients 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 patients 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-seeking behavior, but
  unfortunately, they often demonstrate
  pain- relief seeking behavior.

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Palliative Care

• The Hospice Movement
• The history
• England, 1967 - St. Christophers 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
  often superior 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.

84
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.

86
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.

87
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.
88
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.