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    Caregiver Resources

    End-of-Life Care

    Find information on starting the conversation, providing care and advanced care for end-of-life and resources for after the death of the person you are caring for.

    End-of-Life Planning

    As a caregiver, you may face questions as the person you are caring for approaches the end of their life. You might deal with tough choices if the person you are caring for gets very sick or can't express what they want. Without knowing the details of their wishes and having these wishes documented, you may have to make assumptions.

    How we want to experience the end of life is one of the most important conversations, but many are not having it. Many people find it hard to talk about death. It can be especially tough for families. People often grow more comfortable discussing death as they age. Some people experience denial about death, which means they have trouble acknowledging the reality that death is a normal part of life. This can cause extra stress and potentially cause hurt feelings in close relationships. It also can affect how we care for others.

    Speaking about death with honesty requires courage and it offers many benefits. Here are some tips having end-of-life conversations:

    Start the conversation. Help the person you are caring for consider the emotional, spiritual, medical, and practical choices they may face at the end of life. The Conversation Project and Prepare For Your Care offer resources, videos, and guides to have conversations about the care they may want.

    • Use a prompt. Ask questions like, “What matters most at the end of your life?” to start the conversation.
    • Document their wishes. Ask the person you are caring for to complete the End-of-Life Planning and Funeral Planning Worksheets.
    • Meaningful conversations play a key role in advance care planning. Documenting these wishes is the best way to help ensure that those making decisions are the appropriate people and that the decisions align with the person’s  wishes. Many people prefer to express their wishes in legal documents called advance directives or living wills.
    • Advance Care Planning is the process of discussing and making decisions about future healthcare preferences in the event of serious illness. It allows people to get the care they want – care that aligns with what matters to them. 
    • An Advance Directive is a legal document that can be used to communicate preferences for medical care or to designate someone to make decisions on an individuals’ behalf when they are not able to do so themselves. In Pennsylvania, an advance directive can may include a health care power of attorney, a living will, or a combination of both documents. These documents are best completed while an individual is still healthy and able to make medical decisions on their own.
    • A Healthcare Power of Attorney is a document that allows an individual to designate someone to make healthcare decisions for them if they are unable to communicate their wishes themselves. For example, a mother can designate her daughter as her “health care agent” to make decisions about her  care.  
    • A Living Will is a document that captures an individuals’ preferences for medical care when they are seriously ill and are unable to make decisions for themselves or they are permanently unconscious.

    Talking about end-of-life decisions can be difficult. Understanding the preferences of the person you are caring for can help ensure they receive the care they want. Without an advance directive, healthcare decision making at the end of life can default by law to a particular family member without regard to current relationship status or knowledge of care preferences. 

    Another tool for documenting preferences for end-of-life treatment is the Pennsylvania Orders for Life-Sustaining Treatment (POLST) form. The POLST form translates a seriously ill patient’s wishes for care into an actionable medical order. The form travels with the patient across medical settings (such as a hospital or nursing facility or to the patient’s home) so healthcare providers are aware of the patient’s preferences for treatment. POLST is appropriate for individuals with a life-limiting illness or advanced frailty and may be near the end of life. The form is completed by a healthcare professional as part of a conversation around care preferences at the end of life.

    Not all end-of-life experiences are alike. Some people may wish to die at home, while others prefer to receive care in a hospital or other setting.  End-of-life care aims to promote comfort, dignity, and respect during this time. The process differs for each person based on their preferences, needs, and choices.

    There are ways to support a peaceful death. Respecting a person's end-of-life wishes helps meet their physical, emotional, and spiritual needs. This can make it easier for them and their family.

    • Physical Comfort: Discomfort at life's end can come from pain, trouble breathing, skin irritation, digestive problems, sensitivity to temperature, and fatigue. Medications, repositioning, gentle touch, and proper hydration can help manage these symptoms.
    • Emotional Well-Being: Many people experience anxiety, fear, or depression as they approach death. Providing reassurance, listening, and offering comfort can ease emotional distress. Professional support and counseling may help the person you are caring for prepare for the end of their life.
    • Spiritual and Existential Needs: Finding meaning, resolving past conflicts, and making peace with life are just as important as physical comfort. Some people find comfort in religion, talking to a spiritual leader, or recalling positive memories. Respecting personal beliefs and traditions during this time is essential.

    Here are a few tips that may help manage the complicated and sometimes difficult end-of-life needs:

    • Honor their wishes. If possible, discuss end-of-life preferences in advance. When making difficult care decisions, consider what they would have chosen rather than what you would want.
    • Create a comfortable atmosphere. Some people prefer a quiet space with dim lighting, while others find peace in music, prayer, or familiar voices. Be mindful of any cultural or religious customs that should be honored.
    • Be present and engaged. Sit with the person you are caring for, talk to them, read aloud, or simply listen. Even if they are unresponsive, many experts believe hearing is one of the last senses to fade. Try offering physical contact like holding hands.
    • Bring in support. You shouldn’t navigate this alone. Reach out to doctors, counselors, clergy, family, and friends for guidance and support
    • Share memories. Reminiscing about joyful memories can provide comfort to both the dying person and their loved ones. Speak directly to them rather than about them, ensuring they feel valued and included.
    • Expect and allow yourself grief. The process of saying goodbye is painful. It is natural to feel sorrow, anger, guilt, or relief – sometimes all at once.  Allow yourself to process your emotions at your own pace.

    Losing a loved one, especially as a caregiver, can be an emotional and overwhelming experience. It can be difficult to stay on top of all the necessary logistical steps after someone has died. The amount of paperwork can be a shock, and the process may take months. Here are the key steps to take after the person you are caring for dies:

    • Review end-of-life and funeral plans. If the person you are caring for had pre-arranged funeral or burial plans, locate those documents and follow their wishes. You and the person you are caring for may have utilized the End-of-Life Planning and Funeral Planning Worksheets to plan ahead. If no plans were made, you may need to decide on burial, cremation, or a memorial service. You’ll also need to write and publish an obituary and possibly notify religious or spiritual leaders.
    • Get a legal pronouncement of death. A legal pronouncement of death is required to proceed with funeral arrangements and legal affairs. If the person you are caring for passed away in a hospital or hospice, the staff will handle this. If they passed at home and were not in hospice care, you will need to contact emergency services or a medical professional.
    • Secure the home and belongings. Ensure that valuables, important documents, and personal items are safe. If the person you are caring for had pets, arrange for their immediate care. If the home will remain unoccupied, consider forwarding mail, locking doors, and notifying neighbors or property managers.
    • Notify family, friends, and others. Inform close family and friends that the person you are caring for has died. You might also need to inform employers, community groups, or clubs they joined. If there will be a funeral or memorial service, share the details with those who may wish to attend.
    • Locate legal and financial documents. Collect important  paperwork like the will, trust documents, life insurance policies, and financial records. Get several copies of the death certificate. You will need them for settling accounts and managing legal matters. Contact the estate executor, an attorney, or an accountant for guidance on the next steps.
    • Close or transfer accounts and services. Notify banks, credit card companies, and insurance providers that the person you are caring for has died. Inform Social Security and other government agencies to stop payments or claim benefits. Pay any unpaid bills and debts. Also, set up the transfer or cancellation of utilities, subscriptions, and other services. If necessary, update property titles and financial accounts.
    • Grieve. Losing a loved one is an emotional process, and grief can take many forms. Take time to understand your feelings. Don’t hesitate to ask for help from family, friends, or grief counselors. Take care of yourself by eating well, resting, and staying hydrated. Remember the person you are caring for in a way that feels right for you. You can share stories, keep a journal, or join a support group.

    Grief and logistics can feel overwhelming, but you don’t have to navigate this process alone. Reach out for support and take each step at your own pace.

    If you are experiencing mental health challenges or crises, call the National Mental Health Hotline (1-866-903-3787) for confidential support staffed by trained individuals who can connect you to a local grief counseling or other needed services.