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How to Access Palliative Care in Uganda

Ian is a palliative care specialist at Fort portal Referral hospital, with more than 8 years of experience in clinical patient care.

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Palliative care is a common subject these days. However, its relevance as a medical specialty is yet to be fully appreciated by consumers of health care services. Many patients get frightened when we propose it as part of their management plan. However, those who have received it have appreciated how much it adds to their ability to cope with chronic illness.

What is palliative care about?

According to the WHO definition, palliative care is about;

  1. Enhancing quality of life, and positively influencing the course of the illness.
  2. Providing relief from pain and other distressing symptoms and addressing the psychological and spiritual aspects of the patient and their family through a team approach.
  3. Offering support systems to help the patient live as actively as possible until death, and helping the family members cope during the patient’s illnesses.

In simple terms, it is specialized medical care given to patients with chronic illnesses. Some of the illnesses for which it can be provided include; cancer, diabetes, sickle-cell disease, heart disease, Alzheimer’s disease, advanced arthritis, etc. It aims at preventing unnecessary suffering that may result from physical or psychological symptoms.

This care also considers the patient’s family members. It addresses their fears and concerns about the illness. It provides them with support to deal with the challenges of caring for their loved ones. Additionally, it addresses psychosocial issues like strained relationships within the family. These issues may include sexuality problems if the patient is a spouse

Who provides palliative care?

It is provided by a specially trained team of professionals. This team may include doctors, nurses, social workers, physiotherapists, spiritual leaders, among others. This team does not replace the patient’s primary medical team such as oncologists. Instead, they work closely to ensure the best possible outcomes for the patient. The patient is at the center of the team. We encourage the patient to openly express their needs to the health care professionals as much as possible. The family members often play the caregiver role. This makes them an important pillar of the team. They are in a better position to understand the patient since they spend the biggest amount of time with the patient.

Isn’t it just counseling?

This approach of care is not just counseling. As specialists, your providers will examine you to diagnose complex symptoms. Where necessary, they may request certain investigations to enable them to understand the underlying cause of the symptoms. They will then provide appropriate treatment (including but not restricted to prescribing medications) if necessary. However, counseling is an important component of palliative care and is available if the patient or caregivers need it. Palliative care specialists work closely with your primary team of doctors to manage the illness.

Is It for Me?

A common misconception is that palliative care is for cancer patients nearing death. Your doctor may suggest it as part of your treatment if you’re a patient with any chronic illness causing difficult physical or psychological symptoms. Palliative care also addresses any spiritual and social problems associated with your illness. The aim is to relieve the distress arising from the symptoms, and therefore improve your quality of life. It also helps your loved ones to cope with the challenges caused by the illness. We can initiate it at any time during the illness.

Where is Palliative care provided in Uganda?

In Uganda, palliative care is a relatively new specialty. The biggest provider of palliative care in Uganda is Hospice Africa Uganda(HAU). This non-government organization is the oldest palliative care provider in the country having been founded in 1993. It is based in Makindye, a suburb of Kampala, and has branches in Mbarara and Hoima cities in western Uganda.

Makerere palliative care unit is another provider, based at Mulago national referral hospital. They work closely with the Uganda cancer institute to provide a comprehensive package of cancer care. There are other stand-alone hospices around the country such as Kitovu mobile hospice in Masaka and rays of hope hospice in Jinja. Makerere palliative care unit and Hospice Africa Uganda usually link patients at the Uganda cancer institute from upcountry to these hospices.

Some government hospitals, as well as private hospitals, have initiated a palliative care service usually available at no extra cost. If you are living upcountry, you may get palliative care services from a regional referral hospital near you.

Can I receive care from Home?

It can be provided in a hospital, or within the patient’s home, depending on the circumstances. The patient and family members should ideally agree on where care should be given. This is can at times be influenced by factors such as cost of care, and availability of resources like manpower. According to some studies, however, most patients prefer to be cared for at home.

Does Palliative care mean You're dying?

Although palliative care specialists deal with many chronically or terminally ill patients, it doesn’t mean that you’re dying when your doctor suggested palliative care as part of your treatment plan. Remember that it can be provided at any stage of the illness. It will be provided alongside your primary treatment such as surgery, chemo, or radiotherapy.

Can I decline palliative care?

It is advisable that you accept palliative care as part of your treatment plan. However, like any other treatment option, it is your right to decline if you feel it is not necessary. Your doctor will not impose any treatment that you don’t want. Also, this specialized care goes alongside other treatments to cure or modify the illness. This means that you can receive it for the full course of the illness. You may, however, decide that you don’t need it anymore, at any time. This is within your rights. If this happens, you should make it known by communicating with your doctors or nurses.

This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2021 Ian Batanda

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