When someone you love is seriously ill, everyone in the family may want what is best for them but have very different ideas about what “best” actually means.

One sibling may want to pursue every available treatment while another believes their parent would be more comfortable focusing on quality of life. A patient may want to remain at home while family members worry about whether they can safely provide enough support there. Even decisions about medications, hospitalizations or who should participate in care can become sources of disagreement.

When families disagree about hospice, it does not necessarily mean that anyone cares more or less about the patient. People may simply have different understandings of the illness, different ideas about quality of life or different ways of coping with fear and grief.

During these conversations, one question can help keep everyone focused: Instead of asking, “What does the family want?” consider instead, “What would the patient want?”

Why Do Families Disagree About Hospice Care?

A family disagreement about hospice can come from many places. Understanding the source of the conflict may make it easier to have a more productive conversation.

Different Understandings of the Patient’s Condition

Not every family member receives or processes medical information in the same way. One person may understand that an illness is progressing and treatment options are becoming limited while another may continue to believe that a different treatment could reverse the situation.

Whenever possible, families should make sure everyone is working with the same information from the patient’s healthcare providers.

Different Ideas About Hope and Quality of Life

Hope can mean different things at different stages of an illness.

For one person, hope may mean pursuing treatment for as long as possible. For someone else, it may mean controlling pain, remaining alert enough to talk with family, staying out of the hospital or spending more time in a familiar place.

These differences can become especially important when discussingsigns that it may be time to consider hospice care.

Fear That Hospice Means Giving Up

One of the commonbarriers to hospice care is the misconception that choosing hospice means giving up.

Hospice does not mean that care stops. Instead, the focus of care changes.Hospice care emphasizes comfort, symptom management, emotional support and quality of life for patients with a terminal illness.

Grief, Fear and Guilt

A person may understand the medical facts and still struggle emotionally with changing the goals of treatment.

Agreeing to hospice can feel difficult for someone who is not ready to lose a spouse, parent, sibling or other loved one. Feelings of fear, guilt or anticipatory grief may influence how family members respond to end-of-life care decisions.

Existing Family Dynamics

A serious illness can also bring older family disagreements back to the surface. Questions about who should make decisions, who has provided the most care or whose opinion carries the most weight may complicate an already emotional situation.

Family conflict during hospice is not unusual. One study published in the Journal of Pain and Symptom Management surveyed 161 hospice caregivers and found that 57% reported experiencing at least some family conflict at the end of life. Less advance care planning and communication challenges were among the factors associated with conflict.

This is one reasonend-of-life advance care planning can be so valuable before a crisis occurs.

Start With What the Patient Wants

Family members will naturally bring their own fears, beliefs and opinions into end-of-life decisions. Whenever possible, however, the patient should remain at the center of those conversations.

If the Patient Can Still Communicate Their Wishes

As a general rule of thumb, if your loved one can make and communicate their own healthcare decisions, listen carefully to what matters most to them.

Instead of immediately discussing individual procedures or treatments, consider asking broader questions such as:

• What makes a day feel worthwhile to you?
• What are you most afraid of as your illness progresses?
• How important is remaining at home?
• How important is comfort compared with treatments that could have difficult side effects?
• What level of independence matters most to you?
• Are there treatments or interventions you would not want?
• Who do you want involved in decisions about your care?

The National Institute on Aging encourages people beginning advance care planning to reflect on their values and wishes, then discuss those preferences with loved ones and healthcare providers.

A conversation about goals of care can provide more useful guidance than discussing medical procedures in isolation.

Separate the Patient’s Wishes From the Family’s Wishes

A caregiver may desperately want another treatment because they are not ready to lose someone they love. That reaction is understandable, but it is not necessarily the same as identifying what the patient wants.

During difficult moments, it can help to replace the question:

“What do I want to happen?”

with:

“Knowing this person as well as I do, what would they want?”

That distinction can be particularly important when a family is making decisions on behalf of someone who can no longer speak for themselves.

What If the Patient Can No Longer Make Their Own Decisions?

When a patient is no longer able to communicate their wishes, existing advance care planning documents may help guide the family and healthcare team.

Review Any Advance Directive or Living Will

An advance directive provides instructions about future medical care if a person becomes unable to communicate their own decisions.

Depending on the individual and state, relevant documents or medical orders may include:

• A living will
• A power of attorney for healthcare
• DNR or DNI orders
• POLST, MOLST or similar medical orders where applicable

A living will may specify treatments a person would or would not want under certain circumstances. A durable power of attorney for healthcare can designate someone to make healthcare decisions if the patient cannot make them personally.

Because requirements vary by state, families with questions about the legal effect of these documents should speak with the healthcare team and, when necessary, an appropriate legal professional.

Identify the POA or Authorized Decision-Maker

When someone has designated a power of attorney that person may be responsible for making decisions if the patient loses the ability to do so.

The role is not simply to choose what the POA personally believes is best. Ideally, whoever holds this responsibility understands the patient’s values and preferences well enough to represent what the patient would choose for themselves.

If no POA or advance directive exists, state law may determine who has authority to make decisions.

Common End-of-Life Decisions Families May Disagree About

Family disagreements about medical care can involve much more than whether or not someone should enter hospice.

Whether to Begin Hospice

One family member may believe the focus should shift toward comfort while another wants to continue pursuing disease-directed treatment.

Learning what hospice actually includes, asking questions about the patient’s prognosis and reviewing the goals of treatment together can help families make a more informed decision.

Continuing or Discontinuing Certain Treatments

End-of-life care decisions may involve treatments such as:

• Resuscitation
• Mechanical ventilation
• Artificial nutrition or feeding tubes
• Certain medications or procedures
• Disease-directed treatments such as chemotherapy or dialysis

There is no universal answer about whether a particular intervention is appropriate. The potential benefits, burdens and purpose of a treatment can vary considerably according to the patient’s disease, prognosis, symptoms and goals.

Instead of asking only whether a treatment can be provided, families may find it helpful to ask:

• What is this treatment realistically expected to accomplish?
• Could it improve the patient’s comfort or quality of life?
• What discomfort, side effects or complications could occur?
• Is the treatment likely to help the patient recover?
• How does it fit with the patient’s stated goals and values?

The patient’s physicians and hospice team can help explain what a treatment may mean in that person’s specific situation.

Where the Patient Should Receive Care

Location can become another source of disagreement. One person may want their loved one at home while another believes a facility would provide more support.

Hospice is not necessarily a place. It is a type of care that can often be deliveredwherever a patient calls home, including a private residence, assisted living community or nursing facility. Short-term inpatient hospice care may also be appropriate under certain circumstances.

The right setting can also change as the patient’s condition and care needs change.

How Much Care Family Members Can Provide

A patient’s desire to stay home is important, but so is the practical ability of caregivers to safely support them.

Family members should be open about their physical, emotional and logistical capacity. Honoring the patient’s preferences does not mean ignoring caregiver limitations or safety concerns. The hospice team can help families identify what support may be available and whether the care plan needs to change.

8 Tips for Talking When Family Members Disagree About Hospice

There may not be one conversation that resolves every disagreement. These strategies can help families communicate more constructively.

1. Begin With a Shared Goal

Start with something everyone can agree on.

Instead of:

“Mom needs hospice.”

Try:

“We all want Mom to be as comfortable and supported as possible.”

Starting with the shared goal can make it easier to discuss how different options might help achieve it.

2. Bring the Conversation Back to the Patient

When opinions begin to compete, return to the person receiving care.

Ask:

“What has Dad told us he wants?”

rather than:

“What do each of us want?”

3. Separate Medical Facts From Fears and Assumptions

Different relatives may have heard different information or interpreted the same conversation differently.

Ask the physician or hospice team to explain the prognosis, available treatment options, likely benefits and burdens of each option, what would change under hospice and what care would continue.

4. Give Everyone an Opportunity to Speak

Feeling ignored can make someone more resistant.

Allow relatives to explain what they are worried about before responding. A concern that initially sounds like opposition to hospice may actually be a fear that the patient will not receive enough medical care or that choosing hospice will shorten their life.

5. Ask About Values, Not Just Treatments

Before debating a feeding tube, hospitalization or medication, discuss what everyone is trying to accomplish.

A useful question might be:

“Is the goal to extend life as long as medically possible, or is Dad telling us that being comfortable and staying home are most important to him?”

Once the goals of care are clearer, decisions about individual treatments may become easier to understand.

6. Hold a Family Meeting With the Healthcare Team

A physician, hospice nurse, social worker or another member of thehospice care team can help ensure that everyone receives the same information.

A healthcare professional can also clarify misconceptions, answer questions and keep the discussion focused on the patient’s condition and goals.

7. Focus on the Next Decision

Families do not have to settle every possible future question at once.

Instead, identify:

• What needs to be decided now
• What can wait
• What information is still needed
• Who needs to participate in the decision

Breaking the situation into smaller decisions can make an emotionally overwhelming process more manageable.

8. Consider an Objective Mediator

When the family remains deeply divided, an outside mediator can provide a neutral environment for discussion. Mediators are trained to help people with different opinions reach a common decision, specifically in times of heightened stress and emotion. The goal is not necessarily to make everyone feel the same way. It is to establish a path forward that respects the patient’s rights, wishes and needs.

What If Your Family Still Cannot Agree?

Sometimes good communication alone is not enough. Families can turn to several sources of support.

Hospice Social Worker

A hospice social worker can help with family conflict, emotional concerns, care planning, community resources and questions surrounding advance care planning.

At Three Oaks Hospice, social workers are part of the interdisciplinary team that supports both patients and caregivers.

Hospice Nurse or Physician

When disagreement centers on prognosis, symptoms, medications or the potential benefits and burdens of treatments, clinicians can provide medical context.

Families should not hesitate to ask questions until everyone understands what the available hospice care options do and do not include.

Chaplain or Spiritual Care Counselor

Sometimes disagreements involve faith, meaning, guilt, fear or deeply held beliefs about illness and death.

Hospice chaplains can provide spiritual and emotional support based on the needs and preferences of the patient and family. Three Oaks Hospice Chaplain James describes the role as meeting patients where they are rather than imposing a particular religious approach. You can learn more aboutwhat a hospice chaplain does for families.

Hospice Is About Choosing What Matters Most

Choosing hospice does not mean choosing to stop caring for someone. It means shifting the focus of care.

Under the Medicare hospice benefit, eligible patients elect hospice care for their terminal illness rather than Medicare-covered treatment intended to cure that illness. Hospice can include physician and nursing services, medications for symptom management, medical equipment, hospice aides, counseling, social work and other services related to the terminal illness and related conditions.

The focus may turn toward what matters most to the patient:

• Comfort
• Dignity
• Time with loved ones
• Symptom management
• Familiar surroundings
• Emotional and spiritual support
• Their personal definition of quality of life

Hospice is not intended to hasten death. It is also not designed primarily to extend life.

Research has challenged the assumption that receiving hospice necessarily means living for less time. One retrospective study of 4,493 Medicare beneficiaries with six terminal diagnoses found no significant association between hospice enrollment and shorter survival overall. For several of the disease groups studied, hospice patients had longer average survival than comparable non-hospice patients. The researchers also noted important limitations in the claims-based study design, so the findings should not be interpreted as evidence that hospice will extend an individual patient’s life.

The purpose of hospice remains comfort and quality of life.

Planning Ahead Can Help Prevent Future Family Conflict

The best time to discuss patient wishes at the end of life is often before a crisis forces the family to make decisions quickly.

Advance care planning can include:

• Creating an advance directive
• Completing a living will
• Choosing a healthcare POA
• Discussing where you would prefer to receive care
• Talking about what quality of life means to you
• Sharing documents with your family and healthcare providers
• Revisiting your preferences as your health changes

The National Institute on Aging reports that conversations and planning can make it more likely that people receive the care they want. Advance planning may also help reduce the burden, guilt and uncertainty loved one’s experience when making decisions on another person’s behalf.

Most importantly, do not let the documents replace the conversation. Tell the people closest to you what matters to you and why.

How Three Oaks Hospice Can Help

Families do not have to navigate hospice decision-making alone.

The interdisciplinary team at Three Oaks Hospice includes physicians, nurses, hospice aides, social workers, chaplains and other professionals who work together to support patients and families. The team can help explain care options, address questions or concerns and create an individualized plan centered on the patient’s comfort, dignity and goals.

If your family is still deciding whether hospice is appropriate, Three Oaks can also explain thehospice admissions process and help you understand what to expect. Families exploring their options can also learn more abouthow to choose a hospice provider.

Contact Three Oaks Hospice to speak with a member of our team about your loved one’s needs and available care options.

Frequently Asked Questions

What happens when family members disagree about hospice?

The next steps depend on whether the patient can make and communicate their own healthcare decisions. If they cannot, an advance directive, POA, other designated person or applicable state law may help determine who has decision-making authority. The healthcare team, social worker or mediator may also help families work through disagreements.

Can a patient choose hospice if their family disagrees?

A patient who has the capacity to make their own healthcare decisions generally remains central to decisions about their care. Families with questions about a patient’s decision-making capacity or legal authority should discuss the situation with the healthcare team because requirements can vary by circumstance and state.

What if one family member refuses to accept hospice?

Start by trying to understand the person’s concerns. Ask what they believe hospice will mean and whether they have questions about the patient’s prognosis or available treatments. A family meeting with the physician, hospice nurse or social worker can help everyone receive the same information.

Does choosing hospice mean stopping all medical treatment?

No. Hospice patients continue receiving medical care focused on comfort, symptom management and quality of life. Under the Medicare hospice benefit, the patient elects hospice rather than Medicare-covered curative treatment for the terminal illness and related conditions. Care for health needs unrelated to the terminal illness can still be covered separately, and the hospice team can explain how specific treatments fit into the patient’s plan.

Can someone change their mind after choosing hospice?

Yes. A Medicare beneficiary may revoke the hospice benefit and return to standard Medicare coverage. If the person later meets hospice eligibility requirements again, they may elect hospice again.

What if our family disagrees about where hospice care should take place?

Begin with the patient’s preferences, then consider their care needs and the caregiver’s capacity. Hospice can often be provided in a private residence, assisted living community or nursing facility. Inpatient hospice may also be available when specific clinical criteria are met. The hospice team can help families determine which setting best supports the patient’s current needs.