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).