ZINC 96

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THE RIGHT TO LIVE AND DIE WITH DIGNITY AT
HOME Supporting Terminally Ill Patients who Wish
to Live out Their Lives at Home
ISRAEL S. BERGER, M.D. DORON GARFINKEL, M.D.
MACCABI HEALTHCARE SERVICES
HOME CARE UNIT - DAN DISTRICT
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HOME
HOSPITAL
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BACKGROUND
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• Aging is inevitably associated with an
  exponential increase in the incidence and
  complexity of chronic, age - related diseases.
  Therefore, a net increase in survival would
  translate into more years of compromised
  physical, mental and social functioning. Improved
  medical technology in the last decades has
  resulted in a sharp increase in life span even
  for patients suffering from chronic and terminal
  diseases. Accordingly, the average length of
  survival since a patient is first classified as
  non-curative until death, is increasing all the
  time.
• Some terminally ill patients and their
  families prefer to live at home even in the
  presence of severe debilitating disease, and for
  them hospitalization may represent a severe
  impairment of their quality of life. Obviously,
  due to the very high cost of hospitalization
  particularly in the last months or weeks of life,
  treating terminally ill patients at home is also
  a desirable goal for all medical systems.
  Paradoxically, physicians and health
  professionals sometimes pressure these patients
  to spend their last period of life away from home
  even if there is no apparent advantage of
  hospital over home care. This in part, may be an
  attempt to relieve the heavy medical and legal
  responsibility of caring for dying people at
  home.
• However, the comprehensive palliative
  approach insists on helping patients at every
  stage of their disease by relieving physical
  suffering and also attempting to alleviate
  mental, familial, social and financial problems.
  Palliative care should be given according to the
  patients individual needs, whether they wish to
  receive it in an institutional setting or at
  home.

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• PATIENTS and METHODS
• Over the past year, our Home Care team
  has been taking care of about 350 different
  patients, several dozens died, most of them in an
  institutional setting. Fifteen families of
  terminally ill patients requested that the
  patient live at home until death. They all
  realized that the patient had no cure and we
  repeatedly discussed with them in depth, the
  possibilities and limitations of palliative care.
  In each case, there was a consensus between
  family and patient (unless the later had severe
  dementia) that the patient should stay at home
  no matter what happens, even if the situation
  worsens, symptoms aggravate or death occurs. We
  enabled them to accomplish this by providing a 24
  hour medical availability. In most patient the
  physician was also present at the patients beds
  in their last hours at home.
• RESULTS
• There were 11 men, four women, most of them
  were living with a spouse who also served as the
  primary care giver in about half of the cases.
  The average period of treatment by our team was
  several months, range - one week to several years
  (in one patient with severe dementia). The main
  disease that eventually led to death was advanced
  cancer in seven patients others suffered from
  end stage liver failure, amyotrophic lateral
  sclerosis (ALS), end stage pulmonary fibrosis and
  dementia. The age upon death ranged from 63 to
  93 In all patients, only palliative care was
  given, most of them died with mild or no pain,
  with very few distressing symptoms during the
  last days of their life. In most patients, the
  Home Care physician was present at the time of
  death and signed the death certificate.

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• CONCLUSION
• A proper medical support group can enable
  patients and families who wish to die at home, to
  do so with dignity while experiencing a
  reasonable quality of life before death.
  Furthermore, applying this approach to large
  populations of incurable patients would probably
  have beneficial economic and social implications
  as well.

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FACTORS AFFECTING THE DECISION TO STAY AT HOME
WILLINGNESS OF PATIENT FAMILY
CLEAR DIAGNOSIS PROGNOSIS
SEVERITY OF SYMPTOMS
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ETHICAL CONFLICT SCALE OF TERMINAL PATIENTS
FAMILIES WHO WISH TO LIVE OUT THEIR LIVES AT
HOME A SUGGESTION BASED ON PERSONAL EXPERIENCE
WITH PATIENTS OF OUR HOME CARE UNIT

• 1). NO REAL CONFLICT - A PATIENT WAITING FOR A
  VITAL ORGAN TRANSPLANTATION (HEART, LUNG,
  LIVER,KIDNEYS). MEDICINE HAS NOTHING ELSE TO
  OFFER NO MATTER WHERE THE PATIENT STAYS.
• 2). A PATIENT WITH WIDESPREAD METASTATIC DISEASE
  CLASSIFIED BY THE ONCOLOGIST AS INCURABLE, AFTER
  ALL KNOWN CURATIVE MEANS HAVE BEEN EXHAUSTED.
• 3). A PATIENT SUFFERING FROM MUSCULAR ATROPHY
  (eg. ALS) WHO HAS UNEQUIVOCALLY EXPRESSED HIS
  REFUSAL TO BE TRANFERED TO A HOSPITAL AND/OR BE
  CONNECTED TO ARTIFICIAL RESPIRATORS, IN CASE OF
  RESPIRATORY DETERIORATION.
• 4). A PATIENT SUFFERING FROM DEMENTIA AND
  ANOTHER CHRONIC DISEASE, WHO EXPERIENCES REPEATED
  EPISODES OF UNCONSCIOUSNESS OR COMA WITH NO
  SYMPTOMS OF SUFFERING.
• 5). A PATIENT SUFFERING FROM DEMENTIA WHO STOPS
  EATING AND/OR DOES NOT COMMUNICATE
• REFUSAL OF FORCED FEEDING HAS BEEN
  EXPRESSED - EITHER BY THE PATIENT IN THE PAST OR
  BY THE FAMILY NOW.
• 6). A PATIENT WHO INSISTS ON STAYING AT HOME
  INSPITE OF SEVERE, DIFFICULT TO CONTROL SYMPTOMS
  (eg. SUFFOCATION, DYSPNEA, MASSIVE BLEEDING,
  RECURRENT ENCEPHALOPATHIES).
• 7). A PATIENT IN WHOM A PRIMARY MALIGNANT
  TUMOR HAS BEEN REMOVED, WHO EXPERIENCES
• DECONDITIONING (INCREASED FUNCTIONAL
  DETERIORATION WITH NO PRECISE DIAGNOSIS TO
• EXPLAIN IT), BUT WISHES TO LIVE THE REST
  OF HIS LIFE AT HOME.
• OR A PATIENT WITH HIGH PROBABILITY OF MALIGNANT
  DISEASE, WHO REFUSES FURTHER EVALUATION
• OR THERAPY AND WISHES TO LIVE THE REST OF
  HIS LIFE AT HOME.
• (FORMAL HOSPICE SERVICES ARE NOT PROVIDED
  TO PATIENTS WITH NO CLEAR DIAGNOSIS OF
  MALIGNANCY)