Not long ago, it was common for family member to care for aging loved ones at home. Many extended families experienced the journey of aging and death together.
Nursing homes and hospitals took on a greater share of end-of-life care until people began to embrace hospice in the 1970s. As more Americans transition to in-home hospice, families may once again experience the challenges and mysteries of death.
While every end-of-life journey is unique, we explore some common end-of-life signals and solutions to ease difficulties.
Patients may go long periods without breathing, followed by quick breaths. Labored or congested breathing is common in the final days of life. You may hear the terms dyspnea or air hunger for labored breathing. Air hunger can be distressing for family members and scary for hospice patients. That breathing anxiety in patients can amplify air hunger and start a downward cycle of distress.
Your doctor may prescribe oxygen or increase oxygen levels. Morphine is often used to manage breathing problems. It dilates vessels in the lungs, allowing deeper breaths. Repositioning the patient, vaporizers, relaxation techniques or a breeze from a fan or window may help patients. Most hospice caregivers have experience with reducing breathing problems.
Body temperature can go down by a degree or more as death nears. Blood pressure will also decrease, contributing to reduced blood flow to the hands, feet, nose and lips. You may notice the patient’s skin turning pale, bluish or mottled. Some people may fluctuate between being hot and cold.
Use soft blankets to keep loved ones warm. Don't use electric blankets because hospice patients often cannot tell you it's is too hot. A cool cloth on the forehead or fan can comfort those who feel hot.
Hospice patients may want to eat, but experience difficulty swallowing or with nausea. Medications and disease can also change the taste of food.
Food is often associated with nurturing and keeping up our strength. For many people approaching death, food can cause stomach and digestive problems. Avoid forced or pressured eating by allowing loved ones to eat softened versions of food, when they want it. As the body transitions to active dying, it often signals it has less need for food.
“The issue of nutrition is probably one of the most guilt-inducing and emotionally charged issues for patients and families, said Synthia Cathcart, R.N., BSN. There will come a time when a patient no longer feels any desire to eat. No matter how upsetting to the family, the patient should not be pressured or forced into eating.”
Offer small meals to those who still have a desire to eat. Serve meals during a time when patients experience less pain or agitation. Travel mugs with a straw enable patients to drink on their own schedule. If someone is refusing food or drink, flavored or plain ice chips can keep the mouth moist.
Your loved one may significantly increase the hours they sleep. This is a normal result of having less energy and eating less. Some hospice patients may be restless, agitated or make repetitive motions.
Allow your loved one to sleep. Your doctor may prescribe medications to reduce pain or anxiety.
State of mind is different for every person approaching death. Hallucinations, confusion and reduced responsiveness are common near the end of life.
Keep talking to your loved one. Even if they don’t respond, they may still be able to hear you. Soft background music, dimmed lights and calming scents can be relaxing. Identify yourself when talking and continue to touch and stay close to your loved one.