Discussing end-of-life care with an elderly or ailing loved one can be daunting due to the heavy emotions, stress, and anxiety that the topic can bring. Even though it’s hard, these talks help your loved one’s voice be heard and give you peace of mind that you’re helping them get the care they want. And, according to a 2018 national survey by The Conversation Project, over half of Americans feel relieved when someone else initiates a discussion about end-of-life care. 

Such conversations can also save you from making difficult decisions if your loved one can’t communicate their needs at some point. 

No matter which stage of end-of-life care planning you’re in, this guide can help. We walk you through the different elements of end-of-life care, making an end-of-life care plan, your hospice options and how to pay for them, and tips and resources surrounding saying goodbye to your loved one and managing grief.

Key Takeaways

  • End-of-life care focuses on comfort and managing physical, emotional, and spiritual concerns when a patient is nearing the end of their life. It also involves supporting grieving loved ones. 
  • Hospice can take place in the individual’s home or in a hospital, dedicated hospice facility, assisted living community, or some nursing homes. 
  • Medicare covers hospice services, so many seniors pay little or nothing for hospice care. 
  • For help managing grief, you can use Psychology Today’s search tool to find mental health professionals in your area and GriefShare for in-person or online grief support groups. 

What Is End-of-Life Care?

End-of-life care, often called hospice care, is a compassionate and comprehensive approach to healthcare that focuses on individuals’ physical, emotional, and spiritual needs in the final stages of their lives. 

The goal of end-of-life care is not to hasten or postpone death but to enhance the quality of life and to support patients through this challenging and emotional time. As Dr. Jordan Grumet, hospice care physician and author of The Purpose Code explains, “Instead of focusing on how many days we have left, it serves our patients much more to concentrate on how they can enjoy each day itself… Hospice care often allows people to live each day with more comfort and value.”

End-of-life care is not just about managing the patient’s physical pain but also involves:

  • Addressing emotional distress
  • Providing spiritual guidance
  • Ensuring the loved one’s comfort and dignity are maintained. 

Stages of End-of-Life Care

End-of-life care is often divided into five stages. Knowing these stages can help you and your loved one get the care and support you need in this challenging time.

  1. Making a Care Plan: This is the initial stage where the patient’s physician and care team will work together to determine which end-of-life care services are needed now and in the future, as the illness progresses.
  2. Emotional Preparation: This next stage is when the patient’s social worker, counselor, and religious or spiritual professional collaborate to provide emotional support and help the patient and their family prepare for what’s ahead.
  3. Early-Stage Care: The focus here is on helping the patient live independently as much as possible. This may include hiring caregivers for assistance in activities of daily living or doing home modifications like grab rails and ramps for safety.
  4. Late-Stage Care: Generally, this is the stage where the topic of hospice care comes up. If the patient chooses to stay at home, the healthcare team and social worker will help arrange an in-home care provider with an acute understanding of your loved one’s condition or illness.
  5. Bereavement Care: Unfortunately, this stage is when the patient has died, and the care team offers bereavement support services to the patient’s loved ones, including emotional, spiritual, and psychosocial support.

How to Make an End-of-Life Care Plan

Creating an end-of-life care plan (also known as advance care planning) is the process of discussing what your loved one wants at the end of their life and documenting those desires. Here are some tips that can help you initiate a conversation about such planning with an elderly loved one:

  • Consider Your Loved One’s Values: Advance care planning starts with understanding what your loved one wants their last days to be like. For example, consider whether they would want to leave home for a facility with more robust medical care, and, if so, whether they would want doctors to attempt life-extending procedures if needed.
  • Get Professional Medical Advice: Medicare offers an advance care planning benefit. This allows seniors to use their Medicare coverage to make appointments with doctors to discuss their options for end-of-life care. Professional assistance can help you consider your loved one’s unique health needs as you research care options.
  • Choose a Health Care Proxy: A health care proxy, sometimes known as a medical power of attorney, is a person who is given the legal right to make health care decisions on your loved one’s behalf should they be unable to do so. The healthcare proxy should be a person the family trusts to think and act in their loved one’s best interests. 
  • Create an Advance Directive: An advance directive is another important document to have. This document outlines your loved one’s expressed intentions for end-of-life care, eliminating any uncertainty about treatment should your loved one be unable to communicate their relevant desires.
  • Bring Other Family Members Into The Discussion: Make sure you communicate about these issues with other family members. When everyone understands what your loved one wants, family disagreements are less likely to happen during the difficult days ahead.
  • Be Flexible With Your Plans: Plans can always change. Your loved one may adjust their preferences or perspectives as they age. Be willing to make changes when needed.

Logistical Questions to Ask Your Loved One During End-of-Life Planning

In addition to the emotional questions surrounding end-of-life planning and care, you need answers to some logistical questions to ensure you are prepared for the future. Make sure you document the answers to the below questions. 

  • How can you access protected information (data locked behind account passwords, safe deposit boxes, security question answers, PIN numbers, and the like) that you need to handle your loved one’s affairs?
  • Where do they keep their important legal documents, such as Social Security cards, marriage licenses, divorce papers, real estate deeds, car titles, and similar documentation?
  • Where would they want their funeral or celebration of life to take place, and is there anything specific they’d like to have the family do in their honor?
  • Does your loved one have any special items they wish to give to specific family members that are not outlined in a will?
  • Who would your loved one want to be contacted in case of an emergency if you aren’t available to help them? 
  • If your loved one is a military veteran, which branch did they serve in and where are their discharge papers?
  • Who, other than family, should be personally notified when they pass away, and what is the contact information for those individuals?

Understanding Your Hospice Options

Hospice is a type of care for patients facing terminal illnesses or conditions and is used when the patient’s doctor determines that curative medicine will no longer be helpful to the individual. It’s typically chosen when a patient has about six months or less to live. A hospice provider does not focus on healing the terminal illness, but rather on making the patient as comfortable as possible. 

Where Does Hospice Care Take Place? 

There are several different venues where hospice care can take place, depending on the patient’s condition and preferences. Typically, the options include: 

  • The patient’s home 
  • A dedicated hospice facility 
  • Assisted living communities 
  • Nursing homes 
Expert Advice

“Finding a hospice provider is usually very easy. Patients who choose hospice while in a hospital or nursing home will generally be given a few companies to choose from. If your primary care doctor suggests hospice, he or she will generally know who they like in the area.

The best way to pick the right individual hospice is to find someone in the healthcare community you trust – a doctor or nurse you have worked with that you like – and ask which is the best in your community. I also suggest you reach out to family and friends about their experiences with local hospice companies,” explains Dr. Jordan Grumet, hospice care physician and author of The Purpose Code.

What Services Are Provided in Hospice Care? 

In addition to palliative care, which focuses on maintaining patients’ comfort, hospice care involves more services for the patient and the patient’s family. These may include:

  • Medical social services
  • Physician services
  • Bereavement counseling
  • Caregiver support
  • Grief support
  • Medical supplies and appliances
  • Speech, occupational, or physical therapy (only on a limited basis)

Hospice Costs

As you face challenging tasks regarding end-of-life care for your loved one, paying for hospice care fortunately isn’t typically one of them. Medicare has a comprehensive hospice benefit and most other insurance policies will pay for at least a portion of such services. 

How Much Does End-of-Life Care Cost?

Thanks to the Medicare hospice benefit, most seniors will pay nothing or very little for hospice care. Under Medicare Part A, seniors pay nothing for hospice care itself, and small copays for things like prescriptions for pain and symptom management. It covers hospice in the patient’s preferred environment, whether at home or the senior living community where they live.

Other Ways to Pay for End-of-Life Care

  • Medicaid: Hospice is a state, not federal, Medicaid benefit, but is available in almost all states and covers a wide range of hospice services. Learn more.
  • Veterans Benefits: The VA provides hospice care for veterans enrolled in VA healthcare. Learn more. 
  • Private Insurance: Some private insurance plans offer a hospice benefit, and the benefits can vary depending on the policy. Speak to your broker to learn more about your options. 
Continue Reading: Learn more about hospice payment options

How to Say Goodbye to Someone You Love

Many adults find it challenging to say goodbye to an ailing loved one, often unsure of what to say, when to initiate the conversation, and how to approach it. But, you don’t want to miss the opportunity to express to your loved one what they mean to you. Eden Garcia-Balis, M.S. LMF says, “If possible, have open and honest conversations with your loved one about their wishes, fears, and feelings. It can be difficult, but it can also bring a sense of closure and connection.”  

Keep the following tips in mind as you approach this difficult task: 

  • Follow Your Loved One’s Lead: Let the person of focus take the lead in the conversation when possible. If they want to talk about their death directly, then go along with it. If they prefer to be less direct, mirror that approach as well. 
  • Be Truthful, But Tactful: This is not the time to unload painful drama from the past, even if there is some truth behind it. Sticking with positive memories and sentiments as you say your goodbyes will benefit you and your loved one. 
  • Stay In the Present: Even though it feels like the end is looming, don’t jump too far ahead. Focus on what is happening at the current moment rather than stressing about what the future holds. 
Expert Advice 
“During the time when a loved one is nearing the end of their life, it’s completely normal to experience a whirlwind of emotions. Allow yourself to feel whatever emotions come up, whether it’s sadness, fear, anger, or even relief. It’s okay to feel a mix of emotions during this challenging time,” says Eden Garcia-Balis, M.S. LMFT of Airport Marina Counseling Service (AMCS).

Grieving a Loved One

Most people pass through five stages of grief, which were initially identified by psychiatrist Elisabeth Kubler-Ross in her pioneering 1969 work On Death and Dying. The process isn’t necessarily a linear one, though, and grief is a highly personal process. Your feelings may be complicated, especially if your loved one has been suffering, and that’s okay. 

“It’s common for family members to experience a range of emotions, from sadness and anger to relief, especially if the loved one had been suffering or in pain for a long time… It’s important for family members to be gentle with themselves and allow the grieving process to unfold naturally. Seeking support through counseling or support groups can be beneficial in processing these complex emotions and finding a path forward,” says Nilou Esmaeilpour, MSc, RCC-ACS, SEP, founder of Lotus Counselling and Therapy Centre

You can find mental health professionals in your area using Psychology Today’s search tool and in-person or online grief support groups on GriefShare

Esmaeilpour also notes, “One aspect that often gets overlooked in grieving for an elderly family member is the celebration of their life and legacy.”

She encourages grieving family members to talk openly about the good times and memories they shared with their loved ones as a way to honor them. “This helps to reinforce the positive impact the loved one had on their lives and can be a comforting reminder that while the person is gone, the memories and influence they left behind will continue to live on.” 

Expert Advice 
“Losing an elderly loved one can be incredibly tough, but there are ways to manage the grief. Find ways to honor the memory of your loved one, whether it’s through creating a scrapbook, planting a tree in their honor, or simply sharing stories about them with others,” says Eden Garcia-Balis, M.S. LMFT of Airport Marina Counseling Service (AMCS)

She adds, “If you’re struggling to cope with your grief, don’t hesitate to reach out to a therapist or counselor. They can provide you with the tools and support you need to navigate this difficult time.” 

Resources for Grief and End-of-Life Care Planning

The below resources span the spectrum of end-of-life care: some offer assistance with end-of-life care planning while others focus on grief support. Whether you’re at the end or beginning of your loved one’s end-of-life care journey, these organizations can help. 

Resource

How It Helps

The Center is a retreat in the Rocky Mountains that provides help and healing for people facing the loss of a loved one. In addition to providing a space for people to manage their grief, the Center publishes articles on grieving and loss. Its leader, Dr. Alan Wolfelt, hosts workshops around the country to address topics about grieving. 

The Death With Dignity National Center is a nonprofit organization focused on lobbying for laws supporting better end-of-life care for people nationwide. Death With Dignity also provides patients and their family members with information, education, and support.

NHPCO provides advance care planning assistance to seniors and their families. It has some resources to help start conversations and connect elderly individuals with hospice care in their areas.

The Conversation Project provides resources to help families start difficult end-of-life conversations. It has videos families can watch together, as well as resource guides that help individuals understand their options.

GriefShare helps individuals who are grieving with online resources and local support groups. These in-person support groups meet throughout the United States in most communities. They provide a safe place to sort through the feelings of grief while surrounded by people who understand and want to help.

Frequently Asked Questions 

How long can a person live on end-of-life care?

The duration a person can live on end-of-life care varies greatly depending on the individual’s health condition, age, and disease progression. While some may live for weeks or months, others live for a year or more. It’s important to remember that end-of-life care is about enhancing the quality of life, not predicting or extending its length.

What are the 5 priorities of end-of-life care?

The five priorities of end-of-life care are:

  1. Recognizing when a person may be nearing their end of life.
  2. Communicating with the person and their loved ones with compassion.
  3. Involving the person and their loved ones in care-related decisions.
  4. Ensuring the patient’s physical, emotional, and spiritual needs are met.
  5. Providing support to the patient’s loved ones during the end-of-life process and in bereavement.

What are the end of life signs?

End-of-life signs can include:

  • Increased fatigue and sleep
  • Decreased desire for food
  • Withdrawal from people and usual activities
  • Agitation and restlessness
  • Changes in breathing patterns
  • Bowel and bladder changes
  • Disorientation or confusion
  • Changes in skin color or temperature.
  • Worsening pain or chronic conditions

Remember that these signs can vary greatly from person to person.

Works Cited

Grassey, Julie. “Most Americans ‘Relieved’ to Talk About End-of-Life Care.” The Conversation Project, 10 April 2018, https://theconversationproject.org/wp-content/uploads/2018/07/Final-2018-Kelton-Findings-Press-Release.pdf. Accessed 4 May 2024.

“What Are Palliative Care and Hospice Care?” National Institute on Aging, 14 May 2021, https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care. Accessed 4 May 2024.

Fay, Max. “Hospice Costs and End-of-Life Options.” Debt.org, 29 April 2021, https://www.debt.org/medical/hospice-costs/. Accessed 5 May 2024.

“Hospice Care.” Medicare.gov, https://www.medicare.gov/coverage/hospice-care. Accessed 5 May 2024.

“Hospice Services Payment System.” MedPac, October 2016, https://www.medpac.gov/wp-content/uploads/2021/11/MedPAC_Payment_Basics_22_hospice_FINAL_SEC.pdf. Accessed 5 May 2024.

“Mourning and the 5 Stages of Grief.” PsychCentral, 11 February 2021, https://psychcentral.com/lib/the-5-stages-of-loss-and-grief#denial. Accessed 5 May 2024.