A helping hand from beginning to end

2010-10-08 00:00

“THERE are several misconceptions about the work of Hospice. Many people think that you only call us in the final stage of a life-threatening illness.

“They think that Hospice is only about helping people to die with dignity and without pain. In reality, we are able to — and we want to — help patients from the time they are diagnosed,” says Sheena Sivraman, patient care manager at Msunduzi Hospice Association, which has offices in Edendale and Prestbury.

“We want to let people know that our organisation can help and support anyone in the Msunduzi area who is dealing with a life-threatening illness. We are open to anyone and everyone of any race or age, and our service is free.”

Msunduzi Hospice’s home-based care programme employs nurses and social workers who visit patients and their families at home or in hospital. Trained volunteers also help in all aspects of Hospice work. Through its Prestbury and Edendale offices, the organisation had 450 patients on its books during August this year and helped 496 people, including family members.

Sivraman explains that it is more beneficial for Hospice to be involved with patients and their families from the time of initial diagnosis, as this allows them to build a more trusting relationship. “We can offer a lot of support and information on all aspects of coping with a life-threatening illness and its treatment. One of the hardest parts of having such an illness is the treatment regime. We support the patients, help them deal with it and know that despite some of the unpleasant side effects, they can have a dignified life. They can keep living until the time that they die. No one should die in pain and without control over the symptoms that they experience.

“We provide emotional support, psychosocial intervention, dietary advice, and advice on pain and symptom control. We can offer spiritual and emotional counselling for patients and family members, as well as advise families on how to care for the patient. Unfortunately, not all patients recover, some die. Again, we have a lot of experience in helping people to prepare for dying, and then in providing grief and bereavement counselling to their families. We do not simply withdraw from patients’ families, but maintain a relationship with them for up to a year.”

Sivraman says that the other big misconception Hospice wants to counter is that they deal only with cancer patients. “That is not true as we help people affected or infected by any life-threatening illness, including end-stage renal failure, multi-organ failure, motor neurone disease, HIV, Aids and TB.”

The majority of the patients whom Prestbury helps are cancer patients, while Edendale deals mainly with HIV, Aids and TB patients. However, Prestbury is now seeing an increase in HIV, Aids and TB patients.

While Hospice does not have in-patient facilities, nor the staff to provide 24-hour nursing care for patients, they can refer patients and families to organisations that offer these services. They also provide day care at the Prestbury office on a Wednesday morning for patients well enough to go out (see box). Volunteers transport patients to Hospice where they enjoy a morning of socialising, aromatherapy, reflexology, Indian head massage, craftwork and other activities, as well as tea and lunch.

In a new initiative, Msunduzi Hospice, under the auspices of The Hospice Palliative Care Association of South Africa, is working with the Department of Correctional Services to provide palliative care in prisons. One of the pilot sites is New Prison, where Msunduzi staff are helping implement care for offenders with life-threatening diseases.

Sivraman says that another new initiative in Msunduzi is the establishment of the Pietermaritzburg Palliative Care Forum under the auspices of the Pietermaritzburg Health Forum. “We do not have enough resources to deal with the palliative-care needs of our community, so rely on our relationships with partners. By working with organisations such as hospitals and clinics, we want to establish an effective system of inter-referral and education about palliative care to let people in the Msunduzi area know that there is an organisation that can support patients with life-threatening illnesses and their families, in their own homes.”

• To contact Msunduzi Hospice Association phone 033 344 1560.

Patients praise Hospice

A SAMPLE of comments from some of Hospice’s palliative day-care patients who will not be identified to protect their own privacy:

• “I look forward to Wednesdays as there’s nothing better than being here and talking about our problems and experiences with others who understand. Even though it’s just a few hours, I go home happier. I have chosen my space on the wall of remembrance and the staff have helped me work through the fact of dying.”

• “I have been coming for four years and wouldn’t miss it. I feel so welcomed.”

• “The Hospice staff are just wonderful — we get so much tender, loving care and they’re just a phone call away. They offer so much help and advice and they help our families too.”

• “I don’t feel alone with the illness as there are so many good people to talk to.”

What is palliative care?

ACCORDING to the World Health Organisation (WHO), palliative care is “an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, the early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” It:

• provides relief from pain and other distressing symptoms;

• affirms life and regards dying as a normal process;

• intends neither to hasten nor postpone death;

• integrates the psychological and spiritual aspects of patient care;

• helps patients live as actively as possible until death;

• offers a support system to help the family cope during the patient’s illness and in bereavement;

• uses a team approach to address the needs of patients and their families, including bereavement counselling.

Palliative care will enhance the quality of life, and positively influence the course of illness.

It is applicable early in the course of illness, in conjunction with other therapies to prolong life, such as chemotherapy or radiation therapy, and includes investigations needed to better understand and manage clinical complications. —  WHO.

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