Caregiver Blog: Late-Stage Caregiving: Caring for Patients with Pain

Article Categories: Caregiver Corner & Caregiver Tips and Tricks

When patients are in the late stage or terminal phase of a disease, they experience many difficulties. The signs and symptoms signify that their body is succumbing to the disease.

A very common symptom present in hospice patients is pain. Although the goal of end-of-life care is to provide comfort and preserve quality of life, many patients still experience extreme discomfort.

The challenge for caregivers lies not just in providing measures to ease pain, but also recognizing signs and symptoms. Not all patients who are distressed will tell staff that they are uncomfortable. Some patients stay silent about their pain because they believe that illness is a part of life and should be endured. Some patients take pain upon themselves as a way of penance or punishment for their perceived wrongdoings. These patients keep their distress to themselves.

And then there are patients such as those in late-stage Alzheimer’s disease, who are not able to communicate at all. It takes extra alertness and skill to spot whether they are in pain. Caring for these patients is tricky because they lack the ability to express their discomfort directly, but keep in mind that this doesn't mean they are pain-free.

If you are assisting and caregiving for a patient in the terminal phase of their illness, consider the following steps to help them manage their pain:

1. Ask away.

For patients who can still communicate, ask them if they are in any state of discomfort. If they answer yes, ask them if their pain is getting worse or the type of pain which seems to get better. Then, inform the nurse or physician of their response, so they do a more thorough examination of the patient.

2. Look for physical signs.

Check for swollen body parts. Swelling is almost always accompanied by pain. Check for broken skin and sores, because open wounds hurt. A patient in pain may also have flushed skin.

3. Observe for nonverbal signs.

Grimacing, wincing, unwillingness to move, tearfulness, tensed muscles, and gestures that protect the painful part (e.g., curling up and wrapping arms around their aching belly) are observable signs of extreme discomfort.

4. Pay attention to changes in behavior.

Patients who are in pain appear anxious, agitated, and irritable. They toss and turn in bed attempting to find a comfortable position, and stay still once they feel some relief.

5. Provide comfort.

a. Help them take their pain medications and make sure they don’t miss a dose.

b. For mouth sores, avoid giving spicy foods or those with strong flavors, as they may make the pain worse. Use nonalcohol-based mouthwashes when providing mouth care.

c. Help them find a position comfortable for them. For those who cannot communicate how they prefer to be positioned, keep the head of the bed slightly elevated and prop them up with pillows, especially under bony areas.

d. For immobile bedridden patients, turn them every two hours or as per physician’s recommendations.

e. Provide adequate nutrition and keep the patient hydrated. Although patients with terminal illnesses usually have a poor appetite, caregivers can still be creative while providing healthy comfort foods and offering something to drink every so often.

Late-stage caregiving is both challenging and gut-wrenching, especially when caring for patients in pain. Keep in mind that there many ways to treat pain, but only if caregivers recognize and report their observations in a timely manner. Above all (and perhaps most importantly), caregivers must make their presence known to the suffering patient. Just being there to sit with them or hold their hand can provide much needed emotional support and relief.


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