Not all end-of-life journeys are the same. Death can occur unexpectedly, or someone might remain in a near-death condition for several days. For some older individuals in their final stages of life, physical health declines while mental clarity persists. Conversely, others might maintain physical strength while experiencing a decline in cognitive function. It’s natural to contemplate what transpires when someone is dying and to consider how to offer comfort, what words to use, and what actions to take.
This article explores methods to provide care and comfort to individuals nearing the end of life. Remember that end-of-life care usually involves a team. It’s crucial to consult with the person’s healthcare team to ensure these suggestions are appropriate for their specific situation.
Understanding End-of-Life Care
End-of-life care encompasses the support and medical attention given during the period surrounding death. This care isn’t limited to the final moments before breathing and heartbeat cease. Often, older adults live with chronic illnesses requiring substantial care for days, weeks, or even months preceding death.
The experience of end-of-life care can vary significantly based on individual preferences, needs, and choices. Some may wish to die at home, while others prefer hospital or facility treatment until the very end. Many desire the presence of family and friends, yet it’s not uncommon for individuals to pass away when loved ones are momentarily absent. When feasible, there are proactive steps to enhance the likelihood of a peaceful death for your loved one, respect their end-of-life wishes, and treat them with dignity throughout their final moments.
Alt text: Compassionate end-of-life care is shown as two people holding hands gently on a soft pink blanket, symbolizing comfort and support during difficult times.
Generally, individuals nearing the end of life require care in four key areas: physical comfort, mental and emotional needs, spiritual needs, and practical tasks. Furthermore, the family of the dying person also needs support, both with practical matters and emotional distress.
Providing Physical Comfort in End-of-Life Care
Discomfort during the dying process can stem from various sources. Depending on the cause, interventions from caregivers or healthcare providers can significantly improve comfort. Common sources of discomfort include:
- Pain
- Breathing difficulties
- Skin irritation and itching
- Digestive issues
- Temperature sensitivity
- Fatigue
Pain Management at the End of Life. While not everyone experiences pain while dying, for those who do, pain relief should be prioritized. Concerns about long-term drug dependence or abuse become secondary at this stage.
Severe pain can be debilitating, leading to anger and irritability, which can impede meaningful communication with loved ones.
Family caregivers play a vital role in pain management. Recognizing pain can be challenging, so observing for signs like sleep disturbances, increased agitation, or crying is crucial. Administering prescribed pain medication as directed by the physician is essential, and do not hesitate to ensure adequate pain relief.
Preventing pain is more effective than treating it after it becomes severe. Proactive pain management is key. If pain remains uncontrolled, inform healthcare professionals; medication adjustments or changes may be necessary. Palliative care specialists possess expertise in pain management for seriously ill patients and should be consulted if not already involved, as detailed in What Are Palliative Care and Hospice Care?.
Addressing Breathing Problems. Shortness of breath, or dyspnea, is a frequent experience at the end of life. To ease breathing, consider elevating the head of the bed, opening a window for fresh air, using a humidifier, or employing a fan to improve air circulation. In some cases, medications like morphine can alleviate breathlessness.
Cheyne-Stokes breathing, an irregular breathing pattern characterized by cycles of deep breaths followed by shallow or absent breaths, may occur. Noisy breathing, sometimes termed a “death rattle,” can also occur in those very near death. Although potentially alarming to loved ones, it usually doesn’t distress the dying person. Repositioning the person on their side or elevating their head may help. Prescription medications are also available to manage noisy breathing.
Managing Skin Irritation. Skin discomfort can be significant for someone dying. Maintaining skin hygiene and moisture is important. Use alcohol-free lotions to soothe itching and dryness.
Dryness of the lips and eyes is a common source of discomfort. Consider these tips:
- Apply lip balm regularly to keep lips moist. Clean the mouth with a soft, damp cloth.
- Gently apply eye cream or gel around the eyes.
- Place a damp cloth over closed eyes.
- For dry mouth, offer ice chips (if conscious) or moisten the mouth with a damp cloth, cotton ball, or specialized swab.
Prolonged pressure from sitting or lying in one position can cause bedsores (pressure ulcers). Monitor for skin discoloration, especially on heels, hips, lower back, and the back of the head, which are early signs.
Turning the person every few hours can help prevent bedsores and stiffness. Use foam pads under heels or elbows to reduce pressure. Consult the healthcare team about specialized mattresses or cushions.
Dealing with Digestive Issues. Nausea, vomiting, constipation, and appetite loss are common end-of-life issues. Swallowing difficulties may also arise. Causes and treatments vary, so consult a doctor or nurse. Medications can manage nausea, vomiting, and constipation, which can be side effects of strong pain relievers.
For appetite loss, gently offer small portions of favorite foods frequently. Serve smaller, more frequent meals instead of large ones. Assist with feeding if needed, but avoid forcing food. Loss of appetite is a normal part of dying and generally not painful. Eating and drinking can sometimes increase discomfort. Refusing food can be a sign of acceptance of impending death.
Addressing Temperature Sensitivity. As death nears, hands, arms, feet, and legs may become cool to the touch, and skin may become darker or bluish. Individuals may be unable to communicate temperature discomfort, so observe for clues. Removing blankets or restlessness may indicate overheating. Remove blankets and apply a cool cloth to the forehead.
Shoulder hunching, pulling up covers, and shivering indicate coldness. Eliminate drafts, increase room temperature, and add blankets. Avoid electric blankets due to overheating risks.
Managing Fatigue. Extreme tiredness and low energy are common near the end of life. Simplify activities. Use a bedside commode instead of walking to the bathroom. Offer shower stools or bed sponge baths for hygiene.
Addressing Mental and Emotional Needs in End-of-Life Care
End-of-life care also involves addressing mental and emotional distress. Alert individuals may experience depression or anxiety. Addressing emotional suffering is crucial. Consider consulting a counselor experienced in end-of-life issues to facilitate conversations about feelings. Medication may be helpful for severe depression or anxiety.
Dying individuals may have specific fears, such as the unknown or concerns about loved ones left behind. Fear of dying alone is also common. These feelings can be intensified by reactions from family, friends, and even medical staff. Family and friends may withdraw due to grief or uncertainty about how to help. Doctors may feel helpless and avoid dying patients.
Mental confusion and unusual behavior can further isolate dying individuals.
Here are helpful tips for managing mental and emotional needs:
- Provide Physical Touch. Hold hands or offer gentle massage.
- Create a Comforting Atmosphere. Quiet moments with fewer people may be preferred. Use soft lighting.
- Play Soothing Music. Low-volume music can promote relaxation and pain reduction.
- Involve the Person. If communication is possible, ask about their needs.
- Be Present. Visit, talk, or read, even if there’s no verbal response. Listen attentively if they speak, focusing on understanding rather than formulating your response. Your presence is a valuable gift.
Spiritual Needs During End-of-Life Care
Spiritual needs can be as vital as physical needs for those nearing death. These needs might include finding meaning in life, resolving conflicts, or accepting life’s circumstances. Resolving unfinished business with loved ones can bring comfort. Social workers or counselors can offer support.
Faith can be a source of solace for many, while others grapple with faith or spiritual beliefs. Prayer, religious texts, or music can be helpful. Conversations with religious leaders like ministers, priests, rabbis, or imams can also provide comfort.
Family and friends can express the significance of their relationship. Adult children can share their father’s influence, and grandchildren can express their grandfather’s importance. Friends can convey their appreciation for years of support and companionship. For those unable to be present, video or audio recordings or heartfelt letters can be shared.
Sharing positive memories can bring peace to everyone involved. Some believe that even unconscious individuals can still hear. Always speak directly to the person, not about them. Identify yourself upon entering the room. Consider documenting conversations, as these words can become a source of comfort for loved ones later.
Periods of clarity may occur even in dying individuals with confusion. Cherish these moments but understand they are likely temporary. Visions or conversations with deceased individuals might occur. Avoid correction or interruption; allow them to experience their reality. Dreams of deceased relatives or religious figures are common and often comforting.
Practical Support in End-of-Life Care
Numerous practical tasks arise at the end of life, both for the dying person and the caregiver. Concerns about who will manage affairs after death may arise. Reassurances like “I’ll water your plants,” “Jessica will care for Bandit,” or “Mom will live with us” can provide peace. Remind them their affairs are in capable hands.
Everyday tasks can become overwhelming for both the dying person and caregivers. Offering help with chores like mail collection, message taking, laundry, pet care, or pharmacy runs can provide much-needed respite for the caregiver.
Caregivers can also be burdened by keeping family and friends informed. Assistance with setting up voicemail messages, blogs, email lists, private social media pages, or phone trees can reduce communication demands. Organizations listed at the end of this article offer easy and secure resource setup.
Providing end-of-life comfort and care can be physically and emotionally draining. Primary caregivers should ask for help when needed and accept offered assistance. Suggest specific tasks to those offering help, as friends and family are often eager to assist but unsure how.
Ultimately, realize there may be no “perfect” death. Do your best for your loved one. The profound pain of loss can be eased by knowing you did everything you could when needed.
Further Resources
Get Caregiving Tips from NIA
More Information on Comfort Care
National Institute of Nursing Research 301-496-0207 [email protected] www.ninr.nih.gov/end-of-life
American Music Therapy Association 301-589-3300 [email protected] www.musictherapy.org
CaringBridge 651-789-2300 [email protected] www.caringbridge.org
CaringInfo National Hospice and Palliative Care Organization 800-658-8898 [email protected] www.caringinfo.org
What Matters Now 877-365-5533 [email protected] www.whatmattersnow.org
Content provided by the NIH National Institute on Aging (NIA). NIA experts review content for accuracy and timeliness.
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