Patients who are in their end
stage of life have unique problems. While they suffer with disease symptoms and
treatment side-effects they also face psycho-social, cultural and spiritual
issues related to the process of dying. The family of a dying patient suffers
with grief and needs help in coping with it. The emotions and sensitivities surrounding
a dying patient is significantly higher than other patients. These
distinctiveness of a dying patient makes it important for hospitals to
understand their unique needs and develop policies and practices to fulfill their rights. Following paragraphs explains some of these needs and how can hospitals
help in addressing them.
1. Relief from symptoms
End-of-life patients
frequently experience symptoms of their diseases that may be difficult for them
to bear. While the disease itself may be incurable, what they expect is relief
from these discomforting symptoms. To address this need, hospitals must have a
policy that prioritizes relief from symptoms such as pain while caring for a
dying patient. Following practices must be implemented to take care of symptoms
a.
Assessing the patient as frequently as necessary
to identify symptoms
b.
Providing appropriate treatment for symptoms
c. Taking preventive measure to manage symptoms;
such as pain medication, physical therapy or other therapies
d. Special emphasis to pain assessment and
management, as it is generally the most debilitating symptom experienced by almost
all dying patient
2. Care with respect and dignity
Most
end-of-life patient excessively depends upon others for all their needs including
basic daily activities such as toileting, dressing, eating etc. Such dependence
makes them feel vulnerable and can also negatively affect their sense of self
respect and dignity. There is also a possibility of they being neglected or abused.
This generate a need of such patients to be cared for with due amount of
respect and dignity. Accordingly, hospitals should have a policy for caregivers
to be respectful towards end-of-life patients and provide them with dignified
care. The practices that must be implemented for this includes
a.
Care givers shall respect the patient’s values,
religion and culture
b. Privacy shall be provided to patient whenever
necessary, such as while changing of clothes, examining body parts, toileting
etc.
c. Patients should be spoken with politely and all
information relevant to them shall be given in an understandable manner
d. Consent shall be taken from them wherever applicable
d. Patients shall be attended whenever required without
delay or neglect
3. Spiritual and other special preferences
Spirituality is an important element for most at the end stage of their life.
A dying patient may have some special preferences related to this such as,
offering of prayers, hearing of religious sermons, practicing spiritual
activities. Such need may differ from patient to patient depending upon his/her
religion and spiritual inclination. Hospitals must have a clear policy to
determine what kind of such preferences can be allowed. In general, those request
that does not cause discomfort or harm to others shall be allowed. Following
things can be done to address this need
a. Providing space for carrying out spiritual or
religious activities such as offering prayers
b. Allowing or arranging for spiritual materials
such as scriptures, audios etc.
c. Allowing or arranging for interaction with religious
personnel such as Priest, Moulvi, Pundit etc.
4. Needs of family
The family or
caretakers of a dying patient also have certain needs. They experience feeling
of sorrow and grief and may need people to empathetically behave with them. They
may also want to spend as much time as possible with the patient and would like
to have privacy. Hospitals must understand and address their needs and make
special provisions for making family comfortable. Some of the things that
should be done are
a.
Relaxing visiting policy for the family of such
patient, such as allowing more number of visitors or extend the visit timing
etc. It should however be ascertained that safety of the patient or other
patient does not gets compromised.
b.
Provide privacy to the patient and their family
and not interfere them unnecessarily
c.
Provide help to family members with various
administrative processes of the hospital
d.
Keeping family informed from time to time about
patient’s condition
e. Spending additional time with family, whenever
required, to explain the situation of patient, ongoing treatment and management
of symptoms.
f. While communicating bad news with family due care shall be taken about the psychological status of the family. This six step protocol can be followed for this purpose.
f. While communicating bad news with family due care shall be taken about the psychological status of the family. This six step protocol can be followed for this purpose.
Other than these needs there are
few things related to the end-of-life patients on which hospital must have a
clear policy. These include,
1. Organ Donation – Hospital must check if
the patient has consented for organ donation and takes necessary measures accordingly.
If there is no instruction on this from patient, hospital must sensitively
address this issue to the patient and family. This however shall be done in
most sensitive manner and importance of donation must be explained very clearly
2. Advance medical Directive and Euthanasia
– This shall be followed as per the prevailing law of the country. In India,
legal guideline is available for passive euthanasia and advance directives for
the same. If a terminally ill patient has made a living will for healthcare decision,
same shall be followed.
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