Managing Pain and Symptoms in Serious Illness: What Families Should Know
Pain can be managed. Suffering is not inevitable. No patient in our care should ever feel that pain is simply something they must endure in silence.
One of the deepest fears families carry when a loved one is diagnosed with a serious illness is the fear of pain. Not just the diagnosis itself — but the imagined suffering that might come with it. The fear of watching someone you love in agony, unable to help them.
This fear is understandable. And it is something we want to address directly, honestly, and with the full weight of our clinical experience behind us.
Pain — in most cases — can be controlled. It can be reduced to a level that allows a person to rest, to be present with their family, to experience moments of peace. And the symptoms that accompany serious illness — nausea, breathlessness, fatigue, anxiety — can be managed too.
This is exactly what palliative care is designed to do. And it is what our team at Our Lady’s Hospice has been doing, every day, for over twenty years.
Understanding Pain in Serious Illness
Pain in serious illness is not one simple thing. It has many dimensions — physical, emotional, spiritual and social — and effective pain management must address all of them.
This is what palliative care specialists call “total pain” — a concept developed by Dame Cicely Saunders, the founder of the modern hospice movement. She observed that a patient’s experience of physical pain is always made worse by unaddressed fear, unresolved grief, social isolation, and spiritual distress. And it is made better when those dimensions are cared for alongside the physical.
This is why our care team at Our Lady’s Hospice includes not only nurses and clinical officers, but counsellors, a chaplain, a physiotherapist, and community outreach workers. Because we know that pain does not happen only in the body.
“Pain is always personal. Our job is to understand your pain — not just treat it.” — Our Lady’s Hospice Clinical Team
Common Symptoms and How We Manage Them
The following are the most common symptoms experienced by patients living with HIV/AIDS, cancer, and other serious illnesses. For each one, we explain what causes it and how our team approaches it.
| Pain
Whether caused by cancer, nerve damage from HIV (peripheral neuropathy), infections, or other conditions, pain is the symptom families fear most. Our clinical team assesses pain using a simple 0–10 scale and develops an individual pain management plan for each patient. This may include oral medications, topical treatments, physiotherapy, positioning and comfort aids, and in some cases specialist referral. We reassess pain at every visit. If a treatment is not working, we change it. |
| Nausea and Vomiting
Common in cancer patients receiving chemotherapy and in HIV/AIDS patients on certain medications. We identify and treat the underlying cause wherever possible, and use appropriate anti-nausea medication. We also advise families on dietary adjustments, positioning after meals, and hydration strategies that reduce nausea at home. Small, frequent meals are often more effective than medication alone. |
| Breathlessness
Shortness of breath — known clinically as dyspnoea — is one of the most frightening symptoms for both patient and family. It can be caused by anaemia, infections, fluid around the lungs, anxiety, or the illness itself. Our team treats the underlying cause and also helps manage the symptom directly through positioning, breathing techniques, medication, and — where needed — specialist referral to the Cancer Hospital or University Teaching Hospital. Breathlessness is almost always manageable. Call us immediately if it worsens suddenly. |
| Fatigue and Weakness
Profound fatigue is one of the most underestimated symptoms of serious illness. It is not ordinary tiredness. It does not improve with rest alone. It affects concentration, mood, appetite, and a patient’s ability to engage with family. Our physiotherapy team works with patients to maintain function and independence where possible, and our nutrition team addresses deficiencies that worsen fatigue. Fatigue often responds well to gentle, structured activity combined with adequate nutrition. |
| Anxiety and Psychological Distress
Fear of dying, fear of pain, fear of being a burden, grief, depression, and existential suffering are not separate from the physical illness. They are part of it. Unmanaged psychological distress worsens every physical symptom. Our counselling team provides individual and group sessions for patients and families. Our chaplaincy team offers spiritual accompaniment. Both are free and available to all patients in our care. Psychological pain deserves the same attention as physical pain. Always. |
| Loss of Appetite
Anorexia — loss of appetite — is extremely common in serious illness and deeply distressing for families who equate feeding with caring. Our team provides nutritional guidance tailored to what the patient can tolerate, HEPS supplements when appropriate, and honest, compassionate conversations with families about changing nutritional needs as illness progresses. If your loved one cannot eat, focus on hydration and comfort — not forcing food. |
Five Myths About Pain in Hospice Care — and the Truth
Misinformation about pain management — particularly around medication — is one of the most common reasons families delay seeking hospice care. Let us address the five myths we hear most often.
| MYTH
“Pain medication will make my loved one addicted.” |
TRUTH
When pain medication is prescribed and monitored by a qualified clinical team, the risk of addiction is extremely low. Our team carefully calibrates doses and reviews them regularly. The goal is comfort, not dependency. |
| MYTH
“If they start morphine, death is near.” |
TRUTH
Morphine and other strong pain medications are tools for comfort — not signals of imminent death. Many patients are on these medications for months or years. Starting pain medication means the team is taking suffering seriously, not giving up. |
| MYTH
“They should be tough and endure the pain.” |
TRUTH
Suffering in silence does not demonstrate courage. It simply causes unnecessary harm. Uncontrolled pain worsens anxiety, reduces immune function, prevents rest, and accelerates decline. Managing pain is medically important, not a sign of weakness. |
| MYTH
“The medication will make them confused and not themselves.” |
TRUTH
When correctly dosed, pain medication reduces distress and allows patients to be more present and engaged with their families — not less. Confusion from medication is a sign that the dose needs review. Always inform our team if this occurs. |
| MYTH
“There is nothing that can be done.” |
TRUTH
This is perhaps the most harmful myth of all. Even when a disease cannot be cured, symptoms can almost always be improved. Pain can be reduced. Nausea can be controlled. Anxiety can be addressed. There is always something that can be done to improve quality of life. |
How Families Can Help Manage Symptoms at Home
Between visits from our clinical team, you — the family — are the most important observers and care providers in your loved one’s life. Here is how you can help effectively.
- OBSERVE: Keep a simple pain and symptom diary
Note the time and intensity of pain (0 = no pain, 10 = worst possible), what seemed to trigger it, and what helped. Also record changes in breathing, appetite, sleep, mood, or behaviour. This information is invaluable at every clinical review.
- MEDICATE: Give medication on time, every time
Pain is far harder to control once it has become severe. Medication given on schedule — not just when pain is bad — maintains a steady level of relief. Do not skip doses because your loved one seems comfortable. That comfort is because the medication is working.
- COMFORT: Create a calm environment
Reduce noise, maintain gentle lighting, and keep the room at a comfortable temperature. Familiar music, the presence of loved ones, prayer, and gentle touch all have a measurable positive effect on pain experience. These are not small things. They are real medicine.
- COMMUNICATE: Do not manage this alone
If symptoms change, worsen, or if new symptoms appear, contact Our Lady’s Hospice immediately. Do not wait and hope things improve. Our team is available 24 hours a day for exactly this reason.
Our Approach at Our Lady’s Hospice
At Our Lady’s Hospice, pain and symptom management is not an afterthought. It is the foundation of everything we do.
Every patient who comes to us receives a thorough clinical assessment that addresses physical symptoms, psychological wellbeing, social circumstances, and spiritual needs. We develop an individual care plan with the patient and family — not for them. And we review it regularly.
Our team of clinical officers, nurses, a physiotherapist, pharmacist, and counsellors work together so that every dimension of a patient’s experience is addressed. When specialist intervention is needed, we maintain active referral pathways with the University Teaching Hospital, the Cancer Hospital Lusaka, and Kalingalinga Health Centre.
We do all of this because we believe that a person in pain is a person whose dignity is being compromised. And restoring that dignity is our most fundamental obligation.
Every patient deserves to be free from unnecessary pain. That is not a luxury. It is a right. And it is what we come to work for every single day.
You Do Not Have to Watch Your Loved One Suffer
If your loved one is in pain that is not being well managed — whether they are in hospital, at home, or somewhere in between — please reach out to us.
You do not need a referral. You do not need to wait for the next clinic appointment. You do not need to have a formal diagnosis to ask for help.
A phone call to our team can change what your loved one experiences today. And today matters.
| Call Us. Pain Does Not Have to Wait.
+260 977 740 427 — Available 24 hours a day, 7 days a week Plot 8668, Kamloop’s Road, Kalingalinga, Lusaka info@ourladyshospice.org.zm No referral needed. No appointment required. Pain can be managed. Let us help. |
| About Our Lady’s Hospice and Health Centre
Our Lady’s Hospice and Health Centre is a faith-based palliative care centre in Kalingalinga, Lusaka, Zambia. We have provided compassionate, expert palliative care to patients living with HIV/AIDS, cancer, and serious illness since 2003. Our clinical team includes nurses, clinical officers, a physiotherapist, pharmacist, and counsellors. We never turn anyone away. All faiths are welcome. Open 24 hours. Website: ourladyshospice.org.zm · Phone: +260 977 740 427 |
