Introduction

When a patient is diagnosed to have a terminal illness, most allopathic doctors will turn their focus from curative care to palliative care, with the aim of providing comfort and a pain free state for the patient during his final days.

This is the concept adopted by the hospice movement, which was started by Cecily Saunders in London, England, in 1967. Dr. Saunders believed that every patient with a terminal illness deserves a comfortable, painless and dignified death, and the ideal environment to achieve this is in one's own home, not in the sterile and strange environment of an impersonal hospital.

This hospice movement was extended to the United States by Dr. Lack, and from there to the rest of the world.

Today, we can find hospice care in many countries, including here in Malaysia.

 

Palliative Care When a patient is diagnosed to have a terminal illness and all reasonable means of cure have been exhausted, doctors will shift the goal of care from curative to palliative. The goal of palliative care is to provide the terminally ill patient with effective symptom control so that he or she may have a comfortable, pain free and dignified death.

Hospice Care

Since it began in 1967, the modern hospice movement has embraced and embodied a multidisciplinary, holistic approach to caregiving. Hospice care is delivered by a team of physicians, nurses, aides, social workers, spiritual care givers, counselors, therapists and volunteers, all of whom are trained to provide pain and symptom management for the patient and support for the family.

That support can take a variety of forms, including time off so that the primary caregiver can rest, making sure the patient is not alone, giving advice by phone and helping the family find ways to cope with loss of income and other expenses associated with caregiving.

Additionally, hospice care offers family members at least one year of bereavement counseling, usually in the form of support groups, after the patient's death.

The patient and family are the core of the hospice team and are at the center of all decision-making.

Before providing care, the hospice staff, the hospice physician and the patient's personal physician review the patient's disease history, current symptoms and life expectancy. The hospice team then meets with the patient and his or her family to discuss advance directives, hospice services, pain management, equipment needs and other issues. When enough information is gathered, the hospice team develops a "plan of care", which is regularly reviewed and revised to meet the patient's changing needs.

For example, if the patient's physical pain worsens, the prescription may change from oral painkillers to patient-controlled intravenous analgesia, an epidural catheter or sedatives. If necessary, a cancer patient may also receive drugs to shrink a tumor that is pressing on nerve endings and causing pain or discomfort. In this case, the chemotherapy is considered palliative.

Although hospice team members visit the patient daily, the patient's family members or other caregivers are asked to help feed, bathe and turn the patient and administer medications. Caregivers are also responsible for notifying the hospice team of any changes in the patient's condition.

 
Who is hospice care for?

Hospice care is for patients whose illness is no longer responding to aggressive curative therapies. The focus of care turns from one of curative intent to one of palliative purposes. Patients who have terminal illness should be referred to hospice care early, preferably once the diagnosis is made.

 
The cost of hospice care

In Malaysia, there are many organisations providing hospice care for free. If you need hospice care, one of the first place you should contact is Hospis Malaysia.

Hospis Malaysia is a non-profit charitable organisation committed to introduce and develop professional palliative care for the community. They are not affiliated to any political, religious organisations or health institutions.

Here is their contact information:

A physician's referral is required to receive hospice care. Unfortunately, many doctors are either reluctant to refer patients or they refer them late. This may actually deny terminally ill patients the benefit from earlier participation in palliative care programs. In many cases, the doctor may not suggest hospice care unless the patient or patient's loved ones bring it up first.

Hospice services are available around the clock and are normally rendered at the patient's home. Dying at home is very important to many people since being in a hospital can separate them from their children, grandchildren and friends.

Hospice allows for the emotional and spiritual aspects to come into play a lot more because it focuses on closure, saying goodbye, resolving old conflicts. Dying may not always be a beautiful or wonderful experience, but it can be very meaningful.