Reflecting the provision of high quality care

Reflecting on effect of change and relieving
unnecessary human suffering in a country of approximately 1.25 billion people,
almost one sixth of the worlds population, Palliative care is reassurance to
the patient that whatever the disease, however advanced it is, no matter the
treatment already given, there is always something which can be done to improve
the quality of the life remaining to the patient.

 

Palliative care as WHO defines it is ‘the quality of
life of patients and their families facing the problem associated with life
threatening illness, through the prevention and means of early identification
and impeccable assessment and treatment of pain and other problems, physical,
psychological and spiritual.

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“Just because I’m not dead does not mean I am alive”

 

The dilemma faced by every terminally ill patient is
to truly live his last days on the earth the way he or she sees fit. And nobody
has the right to stop that person from fulfilling his or her last wishes and
living pain free.

 

Hence the provision of high quality care during the
final days and hours of life is an important part of palliative care.
Palliative care must be initiated when the patient becomes symptomatic of their
active, progressive, far advanced disease and should never be withheld until
such time as all treatment alternatives for the underlying disease have been
exhausted.

 

Understanding that having a particular condition can
impact further quality of life and seemingly simple things like good
communication and being treated like an individual can make such a difference,
but this doesn’t always happen. Many patients are most afraid of not knowing
what the process of dying is like, of pain and of being left alone at the end
of their lives.

 

According to several reports published, the challenges
mainly faced by the patients can be classified into two types: – one that is
physically evident and one that no one talks about

 

Challenges that are physically evident includes:

1.     Pain

2.     Depression

3.     Coping

4.     Dignity

5.     Need
for control

 

Challenges that nobody talks about includes:

1.     Poverty

2.     Legal
situation

3.     Not
acceptable to family

4.     Not
acceptable to the social circle

5.     No
awareness

Palliative care is inclusive of all medical
specialties and hence all doctors must be trained in it and work together to
produce lasting and effective results for the patients. The doctors must avoid
clinical nihilism, that is thinking that there is nothing left to be done.

 

And as reports suggest that the main challenges faced
by the doctor are:

1.     Inadequate
training

2.     Insufficient
compensation

3.     Personal
discomfort with death.

 

In a developing
country like India persistent pain is estimated to impact more than seven
million patients each year. In India, with a sixth of the world
population, several millions suffer with severe untreated pain because of
cancer (2.09 million), HIV (2.5 million), and other long-term conditions. About
70% of the cancer patients accessing health-care services are in advanced
stages, requiring pain relief to sustain their quality of life. Oral
opioids are essential, effective, and inexpensive analgesics recommended by the
World Health Organization (WHO) through the three- step analgesic ladder. Although
India recognizes several opioids as essential medicines, more than 96% of needy
patients in India do not have access to this mode of pain relief. In
addition, opioid agonist therapy is unavailable to about 97% of injection drug
users. This is because few institutions in
India stock opioids and most practicing doctors remain untrained in opioid
usage.

And in the state
of Pondicherry with its 7 lakh inhabitants, 9 major hospitals, 4 CHCs, 39 PHCs,
77 Sub-centers, 14 ESI Dispensaries, 17 Disease specific clinics, 2 cancer
center and 1 palliative care center there are only 10 dedicated beds in Mahatma
Gandhi medical college and research institute (MGMCRI), 4 not fully dedicated
beds in JIPMER and 6 not fully dedicated beds in SVMC. Furthermore, only two of
these hospitals along with Pondicherry cancer center have OPD 6 days a week.
And all this is in a state which has a doctor-population ratio of 1:2187 and
whose healthcare infrastructure is superior to that in existence with the rest
of India. And with the effective implementation of various plans has ensured
accessible medical care within an average distance of less than 1.8 kilometers.

Although there is
Hospital based cancer registry(HBCR) in 2 hospitals there is no Population
based cancer registry(PBCR). The status of Narcotic drugs and psychotropic
substance (NDPS) Amended act is not implemented. The state does not have any
strong opioids included in the endorsed list of essential medicines. There have
been no inclusions of objectives for pain relief and palliative care within the
HIV/AIDS program. The availability of opioid analgesics has not been addressed
but the state government has recently endorsed training programs in pain
relief, palliative care and the medical use of opioid analgesics.

Even in a
developed country like the UK, about 167,000 people die from cancer in pain, so
palliative care is not a universal experience. One out four people don’t get
the care and support they need at the end of their life.