In-home hospice care helps terminally ill die with dignity
In-home hospice care helps terminally ill die with dignity
By Ida Indawati Khouw
JAKARTA (JP): When her father was diagnosed with terminal
prostate cancer three years ago, Nusinah was in despair. She not
only knew that she would lose her father, but also realized the
burden she would face having to take care of him day and night
while tending to her two sons.
The eldest of five siblings, Nusinah had to make a difficult
decision. She felt responsible for taking care of her father not
only because he lived with her, but also as her brothers and
sisters were busy at work and could not be of much help.
As her father's condition deteriorated and hospital care was
no longer useful, the family decided to take care of him at home.
Nusinah decided to hire a domestic helper to assist her.
"But she was not patient. Nursing dying people needs extra
effort. That's why I took over the task," said Nusinah.
In fact, although she did not know it, she did not have to
shoulder the experience alone. In-home hospice care is now an
option in Jakarta, and much of the service can be provided free
of charge to patients in need.
"The hospice is a care concept for terminally ill cancer
patients and provides support for the patient's family. The focus
is on relieving the patient's distress rather than curing the
disease," said Melissa S. Luwia, head of the Indonesia Cancer
Foundation's services and rehabilitation department.
The hospice care program, which was set up in 1996 as one of
the foundation's services, provides quality care for the
terminally ill to help them die with dignity, she added.
"The patients' quality of life is usually diminished by pain,
anorexia, vomiting, sores and insomnia," Melissa said.
The word hospice was first used by the Irish Sisters of
Charity at St. Joseph's Hospice in Hackney in 1900 to look after
terminally ill cancer patients. The first modern hospice was
opened in 1967 at St. Christopher's Hospice in Sydenham, London.
Melissa said YKI's hospice care was not in a building nor the
same as care of the chronically ill who might live for many
years.
"Thus, that the patient is dying as determined by a doctor's
prognosis is one of the criteria for being accepted by the
hospice care service. Another is that there should be a caregiver
in the house, who could be either one of the patient's family or
an employed person that will be taught by the hospice team (on
how to handle the patient)," she said.
Although there are three kinds of hospice care, including a
home for terminal patients (the institutional hospice) and
services that are given in hospitals and clinics (palliative
care), "we chose hospice home care because we consider it the
most appropriate option for Indonesians where family ties are
still strong.
"There is the opinion that entrusting patients to such special
homes (the institutional hospice) is like 'throwing' the family
member away," she said.
About 150 terminally ill patients have been in the hospice
care program, according to the program coordinator Utari D.
Simanjuntak.
"We are now taking care of four patients. Given the lack of
team members, we limit our area of service only to Jakarta and
its surrounding (areas), because hospice programs are also
available at YKI branches like in Subang (West Java) and Bali,"
Utari said.
Those accepted in the program will have an initial visit by a
doctor to assess the needs of the patient, such as a wheelchair,
oxygen or special mattress.
"We can lend equipment to those who can't afford it. The care
system is a free service except for medical equipment and drugs
(antiseptic lotion, dressing for wounds, analgesics and drugs to
manage symptoms), with operational costs funded by YKI," Utari
added.
The free equipment was donated by families of deceased
patients, "thus we urge people to donate unused equipment so that
it can be used by those who are in need," she said.
Services
But the service is not only for the patients. Regular home
visits include ones by a nurse to teach the caregiver, doctors
for emergency cases, social workers, volunteers for emotional
support, psychologists, oncologists and religious counselors.
"Volunteers and professionals will become involved only if the
patient or the family needs them. So far we have one doctor, one
nurse, seven active volunteers and several related professionals
such as a psychologist, religious counselor and oncologist," said
Utari.
People from all walks of life are welcome to become
volunteers.
"Usually we are asked to mention our field of interest and
capabilities, while doctors or professionals will train us on the
knowledge of cancer and how to handle patients," said housewife
Pinandoro, 65, a volunteer for the past five years.
Volunteers mostly assist with the psychological aspects of
care.
"We focus more on the importance of communicating with the
patient and family. We will work on the condition that the
patients, or the family, know that they have cancer so that we
can communicate about the illness and how to prepare themselves
to face death," said Pinandoro.
The function of the volunteers is to help the patient accept
their condition.
"The most effective volunteer is one who has experience with
the illness like me. Two of my 11 brothers and sisters died of
cancer while I myself have undergone 10 operations for tumors.
Thus I can share how I faced the condition, and patients trust
me," she said.
Hospice psychologist Siti Rafiah Sutadi said the role of
volunteers was first and foremost to be there to listen to the
patients.
"We always advise them not to say too much or make
suggestions, but to share more. That's why volunteers with
experience of cancer are the most appropriate."
Siti said that volunteers should also understand that
terminally ill patients usually suffer from psychological strain
due to their illness. Patients usually pass through the stages of
shock, denial, anger, bargaining (a condition when patients have
conflicts within themselves, usually relating to God), depression
and submission (release).
"The volunteers should know how to handle the patients going
through these stages," she said.
The hospice home care's secretariat is at Jl. Sam Ratulangi
No. 35-37 Menteng, Central Jakarta (tel. 392-0568).