End of Life Care and Saying Goodbye

If you have an elderly or ailing loved one, you may be hesitant to bring up end-of-life care planning for fear of causing unnecessary stress or anxiety. Though it’s an unpleasant, often heartbreaking task, having this conversation can help your loved one feel more confident that their preferences will be known and respected in their final days. They may even appreciate that you’ve initiated the conversation. In 2018, The Conversation Project released a national survey on end-of-life care conversations that found 53% of Americans feel relieved when another person makes the first move in broaching the topic.

According to the survey’s data, the number of families that have participated in such conversations increased by 5 percent from 2013 to 2018. Even though that number is increasing, it is still only at 32%, which means almost 7 in 10 families don’t have frank discussions about end-of-life care.

If you currently need to start talking to a loved one about end-of-life care, you may feel overwhelmed, and that feeling can keep you from having the discussion. This guide will offer advice on how to talk about end-of-life care while simultaneously providing empathy and support so you feel prepared to have these important conversations with your loved ones.

Saying Goodbye to Someone You Love

One of the reasons it’s hard for many individuals to start the conversation about end-of-life care is that it feels very final. When someone you love is approaching the end, though, saying goodbye is inevitable. Doing so with a plan, even though the anticipatory grief is emotionally difficult, will help you through the process. 

For most adults, saying goodbye to someone who is dying is not something that comes naturally. They don’t know what to talk about, when to bring it up or how to have the conversation. Don’t overthink it. This is your opportunity to tell your loved one what they want to hear from you. For most people, that’s reassurance that you love them, words of candor about what they mean to you, and positive memories of the times you’ve shared. The following tips can also help.

Don’t Fear Talking About the End

It’s OK, and in some ways even comforting, to say that you know the end is coming. Your loved one certainly knows; you don’t need to tiptoe around the fact.

Follow the Patient’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. 

Keep Talking, Even If You’re Unsure If They’re Listening

When the end is near, you may not know if your loved one can hear what you are saying. Many experts believe that those who appear to be unconscious or who are uncommunicative at the end of life are aware of the presence of others and can hear and understand a loving conversation. You may be heard more than you think.

Stay in the Present

Even though it feels like the end is looming, don’t jump too far ahead. Stay in the present, focusing on what is happening at the current moment.

Follow Your Instincts, Not Rules

Many well-meaning people and even professionals will try to tell you how to say goodbye. While this advice can help you through the process, you know your loved one best. Follow your instincts as you navigate this new situation together. 

Don’t Issue a Formal Farewell Every Time

When you don’t know how much time a loved one has left, you may feel obligated to make sure you say a formal goodbye every time you part. That level of seriousness can be unnecessarily stressful for both of you, though, and a simple “I love you” is usually best. 

End of Life Care Options Explained

When it comes to end-of-life care options, each individual has unique preferences. Some older or ailing adults prefer to stay at home as they near the end of their days, wishing to be in a  place they know and with people they love. Others need and want medical care in a community or nursing facility setting. Both choices are equally valid.

Either way, the main goal of end-of-life care is typically palliative care. This type of care focuses on comforting your loved one by alleviating physical and emotional suffering as much as possible. Hospice is a type of palliative care for patients facing terminal illnesses or conditions.

Hospice Care

Hospice care allows medical professionals to provide palliative care to a patient facing a terminal diagnosis. Hospice is called in 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. Hospice care typically takes place in the individual’s home or a dedicated hospice facility. Sometimes hospice professionals can attend to individuals in assisted living and skilled nursing facilities if the facility has a hospice waiver.

In addition to palliative care, hospice agencies provide services to the patient and the patient’s family. These may include:

• Medical social services
• Physician services
• Speech, occupational or physical therapy
• Bereavement counseling
• Caregiver support
• Grief support
• Medical supplies and appliances

What Are the Benefits of Hospice Care?

Hospice care helps reduce the stress of caring for a loved one at the end of life, allowing families to focus on enjoying their remaining time together. Hospice services offer several benefits, both practical and personal:

• Controlling pain and discomfort:With hospice care, individuals facing terminal illness can get pain control help at home so they don’t have to face the end in a hospital or other medical institution.
• Offering emotional support: Hospice professionals are trained in providing emotional support both for the dying individual and for the family. The National Institute on Aging indicates that families who have a loved one go through hospice have greater satisfaction with the end-of-life care their loved one receives than those who do not.
• Limiting unwanted medical procedures: In a hospital or other medical setting, invasive tests and procedures are more common than in a hospice setting, where the focus is on keeping the patient comfortable.

How Much Does Hospice Care Cost?

Around 85% of hospice costs are paid through Medicare coverage, with private insurance covering 6.9% and Medicaid covering 5%. Only about 2.7% of people pay through their own means, according to Debt.org.

Patients who have qualified for hospice care based on the assessment of their doctor and a hospice doctor can use Medicare coverage to pay for care. Original Medicare members pay nothing for hospice care, though they may have a $5 copay for outpatient prescriptions to manage pain and symptoms. If the hospice requires inpatient respite care, the individual usually pays 5% of the Medicare-approved amount.

For families who don’t qualify for Medicare-covered hospice care, personal and private insurance is an option. Some will need to pay out-of-pocket, but the cost for hospice might not be as high as you might think. In 2017, hospice provided in a patient’s home cost $191 a day on average, while hospice in an inpatient treatment center cost $171 a day.

End of Life Care Costs and Financial Assistance

As you face many challenging decisions regarding end-of-life care for your loved one, you may feel overwhelmed by the different care options and their costs, as well as what is and isn’t covered by insurance. Fortunately, many insurance policies will pay for at least a portion of such services. Below, we provide an overview of how much you can expect to pay for end of life care as well as available financial assistance options.

How Much Does End of Life Care Cost?

End-of-life care can take place in a skilled nursing facility and include medical and rehabilitation services. Alternatively, it may take place at home and involve personal, but not medical, assistance. Yet another option is hospice care for those close to the end of their lives, with a focus on providing comfort and reducing suffering. Each type of care is priced differently.

Financial Assistance for End of Life Care

The costs of end of life care can add up quickly; however, you and your loved one don’t have to pay for them alone. Financial assistance is available at the federal and state level, as well as through private companies. Below are some common types of health insurance.

Medicare Coverage of End of Life Care

Medicare is federal government health insurance that guarantees health care coverage for seniors and some younger individuals with disabilities. Considered an entitlement, working Americans who paid taxes into the program automatically become eligible for Medicare upon turning 65. Part A and Part B of Medicare cover all hospital and doctor care deemed medically necessary. Part B is optional and has a premium.

Medicare also offers a Hospice Benefit. This is intended for individuals 65 or older who have a serious illness and six or fewer months left to live and who agree not to participate in any life-saving or curative treatment.

A summary of Medicare coverage as it relates to potential end-of-life care is detailed below. Not all services covered by Medicare are listed.

Medicare Advantage Coverage of End of Life Care

Medicare Advantage is offered to individuals already enrolled in Medicare and is provided by private insurance companies. This option typically adds Part D to Medicare Part A and Part B, giving enrollees prescription drug coverage. Medicare Advantage policies can also cover additional things left out of Medicare Plans A and B. They are a great option for chronically-ill individuals because they can be customized to include treatments for certain conditions that may otherwise be excluded from general Medicare coverage. Common types of Medicare Advantage Plans are Health Maintenance Organization (HMO) plans, Preferred Provider Organization (PPO) plans, Private Fee-for-Service (PFFS) plans, and Special Needs Plans (SNPs).

Medigap Coverage of End of Life Care

Medigap is Medicare supplemental insurance that can help cover costs for things that Medicare does not, such as copays and deductibles. Medigap typically requires enrollment in Medicare Part A and Part B and prohibits simultaneous enrollment in Medicare Advantage plans. Medigap plans require a premium payment to a Medigap insurance company alongside Medicare Part B premiums. However, both plans work simultaneously to cover health care costs.

Medicaid Coverage of End of Life Care

Medicaid is needs-based health insurance provided by both the state and the federal government. The disabled, those receiving Supplemental Security Income, and others with a qualifying financial need can receive Medicaid coverage as long as they are residents of the state giving them benefits and US citizens, with some exceptions. If these individuals utilize the services of Medicaid-certified providers, Medicaid pays for most of their health and long-term care. Additionally, they will have either no or very low deductibles, co-pays, and monthly payments. Seniors receiving Medicare may also qualify for Medicaid if they cannot afford the premiums or deductibles for their Medicare coverage.

Following is a summary of Medicaid coverage as it relates to end-of-life care. Not all services covered by Medicaid are listed.

Hospice and Palliative Care Benefits for Veterans

Hospice and palliative care are covered by the VA as part of the VHA Standard Medical Benefits Package. Both are available to qualifying veterans who are a part of the VA healthcare system.

VA Hospice Care

All enrolled veterans who meet the clinical need requirement are eligible for inpatient, outpatient, or in-home hospice care. There are no copays for hospice care provided by the VA or by contracted service providers.

VA Hospice Care Services Include:

• Services that control symptoms and relieve suffering
• Bereavement support for the family

VA Palliative Care

Enrolled veterans are eligible for palliative care if they meet the clinical need requirement for services. Copays may be required.

  VA Palliative Care Services Include:

• Care of a health team, including a medical provider, social worker, nurse, chaplain, mental heal provider, and others
• Professional help identifying and providing care for physical and emotional symptoms
• Family support services
• Referrals and consults with primary care physicians or specialists

Additional VA Resources

Planning for End of Life Care

Even though it’s hard, having conversations about end-of-life care is important. 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. Such conversations can also save you from difficult decisions if your loved one can’t communicate their needs at some point. 

Advance care planning is the process of thinking about what a person wants at the end of 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 aggressive life-extending procedures. If you aren’t sure how to approach this talk, download the Conversation Starter Kit from The Conversation Project, which provides opening questions and discussion points to explore.

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 physical needs as you research care options.

Choose a Health Care Proxy

A health care proxy is an individual who is given the legal right to make health care decisions on your loved one’s behalf should they be unable to do so. (In some states, this ability is known as medical power of attorney.) The health care proxy should be a person the family trusts to think and act in their loved one’s best interests. Once you and your loved one choose a health care proxy, formally identify that person in a document that follows your state’s laws to ensure the agreement is legally recognized. 

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.

Open the Communication to Others

Make sure you’re communicating 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. You can focus on saying your goodbyes and supporting your loved one through this journey.

Be Flexible With Your Plans

Like people, plans can change. Your loved one may adjust their preferences or perspectives as they age. Their choice for a proxy may change as relationships deepen or fade, or they may gain more understanding about a chronic condition or diagnosis and update their perspective. Be willing to make changes when needed.

Questions to Ask Your Loved One

In addition to the heavy questions about end-of-life planning, you need answers to some logistical questions to ensure you are ready for the days ahead. Some such questions might include:

• 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?
• How would your loved one like to be approached when it is time for them to stop driving independently?
• 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?
• Would your loved one prefer home care, an assisted living community or a small care home for personal care when the time comes?
• Does your loved one have any special items they wish to give to specific family members that are not outlined in a will?
• Who are their current doctors and what is their contact information?
• Who should you contact in case of an emergency if you’re too far away to respond? 
• 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?

Grieving a Loved One and The Stages of Grief

Grief is a difficult and highly personal process. Remember that your other family members and friends are going to have strong feelings as well. 

Most people pass through five stages of grief, which were originally identified by psychiatrist Elisabeth Kubler-Ross in her pioneering 1969 work On Death and Dying. The process isn’t necessarily a linear one, though. You may find yourself bouncing between one stage and another, and some stages will take less time than others. 

As you go through these stages, keep in mind that you can’t fight the natural psychological process of grief and that it has no expiration date. Give yourself and those around you all the time you need to go through these five stages.

The Stages of Grief

Stage 1: Denial

In the first moments and days after the death of someone you love, you may feel shocked or in denial. Even though you might know intellectually that you should be sad, that sorrow may feel less intense than you’d expected. Many people report feelings of numbness. If you were the primary caregiver, you may feel a loss of purpose with the loss of your charge.

What you might be feeling:

• Numbness
• Distraction
• A sense of unreality 
• Separation from other people
• Without purpose

During this stage, permit yourself to feel exactly what you feel. If you can’t cry, it’s OK. If you cry most of the time, that’s OK too. Try to push through the denial by talking about what you are going through with others.

Stage 2: Anger

After you get through the initial pain, you may find yourself angry and reactive. This is in part a natural response to protect yourself from the pain you’re experiencing, but it can be unsettling to both you and to others. If left unchecked, your anger and frustration can turn into bitterness.

What you might be feeling:

• Sudden bursts of outrage, feelings that it “isn’t fair”
• Frustration
• Resentment
• Self-pity

During this stage, try to avoid the people or situations that seem to spark your anger and frustration. Tell those around you what you are experiencing, so they will be more understanding about your anger. Most importantly, remember that these feelings will eventually pass.

Stage 3: Bargaining

This is the stage when you might start thinking about what might have been. It’s fairly common for the recently bereaved to believe that something they did or failed to do was the reason for their loved one’s death. It’s also normal for the recently bereaved to fantasize about being able to bring back someone who has died, even though they know it’s not possible. This stage appears to postpone some of the sadness, confusion and pain of grief.

What you might be feeling:

• Regret
• Guilt
• Desire to go back and change the past 

Bargaining can bring on feelings of extreme guilt. During this stage, keep in mind that there’s nothing you can do to change the inevitability of death or the events of the past.

Stage 4: Depression

As you emotionally work through what has happened, your feelings will intensify. This is when grief can be at its most difficult. You may blame yourself for what happened, or you may feel regret for what was left unsaid. Sometimes you will feel relief, and that relief can bring even more guilt. All of these feelings are normal.

What you might be feeling:

• Extreme changes in your mood
• Exhaustion, including emotional exhaustion
• Guilt

To get through this stage, it’s important to talk through your memories while finding ways to keep your mind from replaying negative ones over and over. Give yourself room to feel these feelings, but reach out for help if you feel too down and depressed. Consider joining a support group or speaking to a therapist.

Stage 5: Acceptance

Over time, you will find yourself moving past the grief and accepting what has happened. Sometimes this is an active choice, and sometimes it happens because life moves on and you have no choice but to move on with it. This step can be very gradual and slow, and that is healthy.

What you might be feeling:

• Reawakening to the world around you
• New moments of joy, followed by feelings of guilt for that joy
• New strength
• Feeling that you are moving into a new stage of life

This is the time to start giving back to others and seeking out satisfying experiences. You are ready. Make sure you don’t give in to “survivor’s guilt” — a feeling that you don’t deserve to be happy because of what you have lost.

Resources for Grief and End-of-Life Care Planning

When a loved one is approaching the end of their life, you need to surround yourself with help and support for both your loved one and the family members who will be caring for them. There are many resources available for seniors, families and those facing grief that can make this process a little easier. Consider seeking help from the following support groups and organizations.

Resource	Website or Contact	How It Helps
Center for Loss and Life Transition	https://www.centerforloss.com/	The Center is a retreat in the Rocky Mountains that provides help and healing for people facing the loss of a loved one or a serious life change, such as the transition out of being a primary caregiver. 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.
Death With Dignity National Center	https://deathwithdignity.org/	The Death With Dignity National Center is a nonprofit organization that focuses on legislation that provides better end-of-life care for people throughout the country. In addition to helping lobby for these laws, Death With Dignity provides patients and their family members with information, education and support.
National Hospice and Palliative Care Organization	https://www.nhpco.org/(703) 837-1500	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	https://theconversationproject.org/	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	https://www.griefshare.org/	GriefShare offers email encouragement and local support groups for individuals who are grieving the loss of a loved one. These in-person recovery 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.
The National Alliance for Caregiving	https://www.caregiving.org/	If you are a caregiver, the NAC can connect you with several resources that can make your job easier. This includes resources to help with planning for the future, including end-of-life concerns. The Alliance also advocates for caregivers in local, state and federal governments.

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 June 2021.

“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 June 2021.

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

“Hospice Care.” Medicare.gov, https://www.medicare.gov/coverage/hospice-care. Accessed 5 June 2021.

“Hospice Services Payment System.” MedPac, October 2016, http://www.medpac.gov/docs/default-source/payment-basics/medpac_payment_basics_16_hospice_final.pdf. Accessed 5 June 2021.

“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 June 2021.