End-of-Life Comfort Dr. Giovanna Sirianni Staff Palliative Care Physician Princess Margaret Hospital

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End-of-Life Comfort Dr. Giovanna SirianniStaff
Palliative Care PhysicianPrincess Margaret
Hospital

• UHN Pain Conference
• Tuesday, February 27, 2007

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Objectives

• Define palliative care and appreciate its
  evolving role
• Understand that comfort at the end-of-life
  requires a multi-factorial assessment of patients
  and treatments directed beyond physical pain
• Understand the concepts of total pain, a good
  death and suffering, appreciating how they may
  apply to providing comfort at the end-of-life
• Develop basic skills and strategies in managing
  pain and symptoms in patients at the end-of-life

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Our Overall Goals

• Optimal relief of pain and suffering are the
  first two morally mandatory obligations of any
  physician who cares for the incurably ill.

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Case Review

• Mrs. G. is a 45 year-old woman diagnosed with
  metastatic breast cancer several years ago.
  Despite optimal treatment with surgery, radiation
  and multiple lines of chemotherapy, her disease
  continued to progress. She has evidence of known
  metastases to the liver, bones and brain. She is
  married and has two young daughters.

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Case Review

• She is admitted to the medical oncology ward
  because of an inability to cope at home due to
  limitations in her functioning. There do not
  appear to be any reversible causes for her
  progressive weakness and no further treatment is
  indicated at this point. Mrs. G. is distraught by
  the news.

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What role do we have in helping this patient and
her family?

• What approach should we take in addressing the
  issues she is facing?

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Definition of Palliative Care

• Definition of palliative care continues to evolve
• Lack of clarity in terminology
• Health Canada (1989)
• Palliative care primarily directed to the
  dying and bereaved to meet the physical,
  emotional and spiritual needs through death and
  bereavement.

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Definition of Palliative Care

• World Health Organization (2002)
• Palliative care is an approach that improves the
  quality of life of patients and their families
  facing the problems associated with
  life-threatening illness, through the prevention
  and relief of suffering by means of early
  identification and impeccable assessment and
  treatment of other problems, physical,
  psychosocial and spiritual.

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Definition of Palliative Care

• Canadian Hospice Palliative Care Association
  (2002)
• Combine words hospice palliative care as one
  term
• Complex, six part definition
• Aims to relieve suffering and improve the
  quality of living and dying
• Treat all active issues Prevent new issues from
  occurring
• May either complement disease-modifying
  treatment or become the total focus of care

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Is it Palliative Care or End-of-Life Care?

• Initially, considered synonymous terms
• End-of-Life care a newer term
• No consensus on which term more accurately
  reflects reality
• Personal opinion
• Palliative care the overarching concept
• End-of-Life care a component

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Views on Death

• The lighter side
• I dont want to achieve immortality through my
  work I want to achieve it through not
  dying. Woody Allen
• Its either the wallpaper or me. One of us has
  to go. Oscar Wildes last words
• Things turn out best for the people who make the
  best of the way things turn out. Art
  Linkletter

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Views on Death

• The inspiring side
• The tragedy of life is not death, but what dies
  inside us while we live. Norman Cousins
• Watching a peaceful death of a human being
  reminds us of a falling star one of a million
  lights in a vast sky that flares up for a brief
  moment only to disappear into the endless night
  forever. Elizabeth Kubler-Ross

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What is a Good Death?

• No objective measure
• Determined by the patient, an intensely personal
  and unique experience
• Impact of dying resides with family during
  bereavement, arguably also with staff
• Health professionals should be aware of the
  feelings provoked by death, in patients and in
  themselves

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What is a Good Death?

• Life happens before death, being no less
  important than other aspects of a patients life
• Our role is to help people to live until they
  die, to see death in life and life in death
• Experience of death should be valuable and
  meaningful for the person and his or her family
• How can this be achieved?

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At the core of any suffering is a glimpse of
death Life is a continual dance with change,
impermanence and loss.
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Are pain and suffering the same?

• They are quite different concepts, but also share
  commonalities
• Pain has an immediate quality
• Suffering often relates to the past or the future
• One concept can exist without the other
• Pain goes beyond the physical, incorporating
  thoughts and feelings
• Suffering can be related to physical pain, but
  often goes beyond the physical realm

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Are pain and suffering the same?

• Suffering comes from a fear of losing what is
  valued and/or getting what is not wanted
• Existential suffering is a discrepancy between
  ones belief of how the world should be and how
  life actually evolves
• Take home point When assessing and managing
  pain, especially in the dying patient, you must
  think and assess beyond the physical

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Responding to Suffering

• Manage treatable pain effectively, in accordance
  with patients beliefs and wishes
• Ask patients about their distress/suffering as
  you would for pain
• Initiate a discussion, engage in dialogue
• It may not be possible to fully remove or
  alleviate suffering

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Cancer and Pain

• 70 of patients with advanced cancer have pain
• WHO estimates that 80 of people who die from
  cancer worldwide die with uncontrolled pain
• Pain managed poorly because of patient, family
  and health professional factors

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Total Pain

• Patients experience of pain related to more than
  somatic factors
• Components of Total Pain
• Somatic source
• Patients emotional status
• Patients personality
• Patients family
• Patient and family ecology
• Service providers

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Physical Changes Approaching Death and Strategies
for Management

• Pain may be difficult to assess in the last hours
  to days of life
• Patient may have decreased level of consciousness
  or be comatose
• Unconscious patient may be deemed to be in pain
  if they experience any two of
• The patient groans
• The patient is agitated
• The patient shows signs of contortions of the
  face, hands and/or whole body

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Physical Changes Approaching Death and Strategies
for Management

• Preferred route for medication administration is
  subcutaneous (sc) at the end-of-life
• Medication should be prescribed every 4 hours,
  with breakthrough medication available very 30-60
  minutes or via continuous subcutaneous infusion
• If the patient is opioid naïve, start with
  morphine 5 mg sc or hydromorphone 1 mg sc every 4
  hours, as needed
• If the patient is not opioid naïve, consider
  increasing their routine dose by 25-50 if pain
  is poorly controlled

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Physical Changes Approaching Death and Strategies
for Management

• Frequently re-assess whether pain well-controlled
  and whether breakthrough medication dose
  effective
• If patient utilizing more than 3 breakthrough
  doses of pain medication in a 24 hour period, may
  need to increase the dose of their routine opioid
• Avoid the use of Fentanyl patches at the
  end-of-life
• Difficult to titrate if unstable pain
• Can take up to 12 hours before peak concentration
  of pain medication achieved

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Physical Changes Approaching Death and Strategies
for Management

• Consider the use of adjuvant medications
• Most adjuvant medications are oral formulations
  and may not be appropriate at the end-of-life
• Dexamethasone can be helpful as an adjuvant for
  visceral, bone and neuropathic pain
• Dexamethasone is available via the sc route, dose
  generally between 4-16mg/day

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Physical Changes Approaching Death and Strategies
for Management

• Respiratory
• Irregular patterns and apnea common
• Upper respiratory secretions
• Hemoptysis (rare)
• Management
• Irregular breathing patterns and apnea are not
  related to dyspnea. Reassure family.
• Glycopyrrolate or Scopolamine 0.4mg sc q3hr prn
  for upper airway secretions
• Dark towels, opioids and sedation for massive
  hemoptysis

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Physical Changes Approaching Death and Strategies
for Management

• Neurological
• Decreased level of consciousness until death
• Delirium, restlessness
• Twitching/myoclonus
• Seizures (rare, unless prior seizures with brain
  tumor)
• Management
• Anti-psychotic medication for delirium (e.g.
  methotrimeprazine Nozinan 6.25mg-12.5mg sc q4hr
  prn or haloperidol Haldol 0.5mg-1mg sc q4hr
  prn) as starting dose
• Benzodiazepines for twitching/seizures

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Physical Changes Approaching Death and Strategies
for Management

• Gastrointestinal
• Food/fluid intake will decrease to zero
• Risk of choking
• Dry mouth
• Management
• Excellent mouth care, with sponge sticks, sodium
  bicarbonate mouthwash and artificial saliva
  preparations
• Re-assure family that decreased food/fluid intake
  part of the natural process of dying

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Physical Changes Approaching Death and Strategies
for Management

• Cardiovascular
• Decreasing blood pressure
• Rapid, weak heart rate
• Arrhythmias
• Pulmonary edema
• Management
• Treat pulmonary edema with diuretics for comfort
• No other interventions indicated
• Re-assure family regarding the cardiovascular
  changes that are expected

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Physical Changes Approaching Death and Strategies
for Management

• Skin
• Pale, blue, mottled skin
• Cool or febrile to the touch
• Skin breakdown
• Management
• Turn q4hr, as tolerated by patient, to prevent
  skin breakdown
• Order appropriate pressure relief mattresses, if
  prognosis expected to be longer than days

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Physical Changes Approaching Death and Strategies
for Management

• Genitourinary
• Incontinence
• Reduced urine output, dark colored urine
• Management
• Incontinence pads, Foley catheter

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Case Review

• Mrs. G. is referred to the palliative care team.
  Her issues at present include pain, likely
  secondary to her bone metastases and marked
  fatigue, causing her to be bed bound. She is also
  significantly distressed by the thought of her
  daughters growing-up without their mother and
  concerned her husband will be unable to cope
  without her. She has not been able to speak to
  her daughters about her advanced stage of
  illness.

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Case Review

• Her pain is managed with the use of opioids and
  dexamethasone as an adjuvant for bone pain. You
  decide to involve a team specialized in grief and
  bereavement for children who have helped
  facilitate a discussion between Mrs. G. and her
  children regarding her advanced illness. You have
  also referred the family to a local hospice who
  will help provide support in the home.

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Case Review

• Mrs. G. begins to develop an altered level of
  consciousness and exhibits changes which are in
  keeping with the last hours to days of life. She
  is moved to a private room where her family and
  friends can be with her at all hours. All her
  medications are changed to the sc route. The
  family is taught how to provide good mouth care
  to minimize sensations of thirst. The staff are
  supportive and helpful as they prepare the family
  for Mrs. G.s imminent death.

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Summary

• Palliative medicine has evolved beyond
  end-of-life care
• Educating patients about the expanding role of
  palliative care is important
• Multi-factorial assessment of pain and symptoms
  at the end-of-life should go beyond somatic
  factors
• Comfort at the end-of-life goes beyond simply
  using opioids

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References

• Downing GM, Wainwright W. Medical Care of the
  Dying. 4th ed. Victoria, British Colombia
  Victoria Hospice Society 2006.
• Librach SL, Squires BP. The Pain Manual
  Principles and Issues in Cancer Pain Management.
  Revised Ed. Montreal, Quebec Canadian Cancer
  Society 2002.
• Pereira J, Bruera E. Alberta Palliative Care
  Resource. Calgary, Alberta Alberta Cancer
  Foudation 1997.