Home Care Considerations for End-Stage Cancer Patients

Most end-stage cancer patients inevitably face the question of how to spend their final days: professional medical care in a hospital or nursing facility, or home care, spending the last days at home? The choice depends on personal wishes and family finances.

In practice, most cancer patients in China ultimately choose to spend their final days at home, which is also my strong recommendation. After all, the patient’s remaining days are few, and in those final days what matters most to nearly all patients is family affection. Spending the end at home reduces the family’s financial burden, lets the patient feel the warmth of home, and enjoys the most precious remaining family bonds.

But home care requires family members to master some nursing knowledge; only with good home care can the quality of the patient’s final days be assured. End-stage patients and families should best give up the fantasy of cure and focus on relieving suffering and improving quality of life. Continuing to chase cure and trying one unreliable treatment after another may only make the patient’s final days more painful.

Doing the following can improve the patient’s quality of life.

First, provide basic nursing. Turn the patient every one or two hours; use cushioning to protect bony prominences and prevent pressure sores. To better prevent pressure sores, I recommend that family members regularly sponge-bathe the patient, change clothes, promptly clear excreta and waste, and apply a modest amount of skin moisturizer (something like Dabao is sufficient) to protect the skin. Avoid diapers as much as possible, especially in hot seasons.

If the patient has renal hydrops and cannot urinate spontaneously, it is best to have a urinary catheter inserted at a grassroots clinic to drain the urine; this eases the kidneys and avoids diapers. Once a catheter is in, return regularly to have staff change it. Generally, latex catheters should be changed every 2 weeks and silicone ones every 4 weeks.

Prolonged diaper use easily causes urinary and reproductive tract infections, and in severe cases renal failure. If the patient has no choice and must use diapers, family members must clean excreta several times a day and sponge the patient with warm water after each cleaning. Periodically collect urine for urinalysis at the hospital; if a urinary tract infection appears, promptly treat with cefixime dispersible tablets, Niaoyanqing, and similar agents.

Similarly, patients with biliary obstruction can undergo biliary drainage, with a tube draining bile externally. Patients with esophageal or cardia cancer who develop pyloric obstruction can have a nasogastric feeding tube or a stent placed at the hospital to solve eating. Many people, bound by tradition, dislike tubes or stents in the body, but this backward idea must change. Cure is already hopeless in end-stage disease; using modern medical technology to place a tube or stent can markedly improve symptoms and quality of life, far more effectively than taking pills or supplements.

Also provide oral care 2–3 times daily; apply lip balm or vegetable oil to prevent chapped lips, and give water at regular intervals. Keep room temperature around 18–24°C, the most comfortable range for the human body, and humidity around 50%; ventilate the room frequently.

Second, relieve clinical symptoms as much as possible. For cancer pain, use the three-step analgesic ladder—oral analgesics, topical patches, massage, moxibustion; whatever reduces pain may be tried. Patients with cancer fever should take antipyretics or use fever-suppositories. If the patient has phlegm, help by patting the back to expel it, or use a suction device or nebulizer to ease suffering.

Note that symptom management at this stage is usually imperfect, so patients and families should not set expectations too high. When the major symptoms are controlled, do not over-tinker.

There are always family members who constantly demand that doctors solve every problem, requesting changes almost every day, even several times a day. If doctors cannot meet their demands, they try other methods themselves, with the result that previously well-controlled symptoms break down.

This actually agitates and tortures the patient, adding suffering. Many patients end up not only failing to solve the original pain but gaining many new ones. If patients and families reasonably manage expectations, control emotions, avoid anxiety, impatience, and reckless decisions, the patient’s final days will actually have higher quality of life.

Third, provide nutritional support. In principle, small frequent meals; offer high-protein (fish, eggs, milk), high-calorie, vitamin-rich liquids or semi-liquids; avoid spicy and greasy. For swallowing difficulty, choose homogenized meals or tube feeding. For the very weak, community nurses may visit to infuse glucose, fat emulsion, and saline to build strength and adjust electrolytes.

In practice, however, one must also consider the patient’s digestive capacity and wishes; since the remaining days are few, if the patient craves a particular food, it is reasonable to fulfill the wish rather than over-restrict.

Finally, provide psychological and emotional support and do good hospice care. Many end-stage patients’ families ask what they can do; my answer is always: spend as much time as possible with the patient. Sit with them, listen to them, talk about things that cheer or relax them—this is what they need most. Visits and comfort from relatives and friends can soothe suffering and ease fear of death.

Death is everyone’s endpoint. Filial piety does not require preventing a patient’s death, especially when death is inevitable and should not be forced. Sometimes I feel some relatives lose their senses: to show love for a dying loved one, they inflict needless “rescue” procedures that only add suffering, so the patient endures more pointless pain before dying. True love respects the natural course, respects the patient’s feelings, and does not add to their pain.