End-of-Life Care Guide

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.

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.

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.

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.

• 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.
• 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.
• 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.
• 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.
• 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.

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.

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?

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.

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

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)

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.

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.

• 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.

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. LMFT 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.

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.

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.”

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.

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.