How to talk about hospice: A guide for patients and loved ones

A life-threatening illness, terminal diagnosis or end-of-life prognosis is devastating. Avoidance or denial is common and understandable. However, learning how to talk about hospice care can help ease some of the strain during this difficult time.  

The first question is: How does the patient wish to proceed? Do they want to continue curative treatment in hopes of a turnaround, even if medical professionals have advised that this is unlikely? Or, conversely, do they wish to suspend curative treatment, accept their prognosis and ideally, focus on making the time they have left as comfortable and fulfilling as possible?

These questions and decisions usually involve the patient, their loved ones, their clinicians and their clergy or spiritual advisers, if desired. So, whether the patient is you or a loved one, you should be prepared for what can be a difficult and emotionally tough conversation to determine the best next steps.

If you or a loved one is considering hospice care, this article contains practical guidance on how to start the conversation, who should be involved, what essential issues should be addressed, how to reduce emotional burnout and more.

Hospice care: Starting with the basics

For those who are not familiar with hospice care, here are some basic facts that will help inform your understanding of how to talk about hospice care with others.

Who is eligible for hospice?

Hospice is an option for those who have been given a prognosis of six months or less for life expectancy. Hospice care focuses on optimizing quality of life during a patient’s final months, providing comfort care and symptom management regardless of whether certain treatments continue.

What is the role of hospice?

While many people believe that hospice is focused on the death of the patient, instead, it is focused on enhancing the life of the patient in their final months. Hospice care is designed to keep the patient comfortable, reduce pain and if possible, actively engage with life and loved ones for as long as possible. Care is provided by physicians, nurses, social workers, physical and occupational therapists and if desired, religious and spiritual counselors. Psychological and spiritual support is also available to caregivers and loved ones, as well as respite care.

Where is hospice care provided?

Hospice care can be provided in a dedicated hospice facility, a skilled nursing facility, a hospital, an assisted living facility or in the patient’s home. Hospice can be provided wherever the patient calls home.

How much does hospice care cost?

Fortunately, hospice is covered by Medicare, with no copay or out-of-pocket cost for qualified Medicare and Medicare Advantage beneficiaries. All services, supplies, and medication related to the primary diagnosis and symptom management are covered. Most private insurers also cover hospice, so in most cases, financial considerations will not be an issue.

When and how to start the hospice conversation

Knowing how to talk about hospice care ahead of time allows families to make informed decisions before a crisis occurs. We encourage seriously ill patients or patients of advanced age and their families to talk well in advance of a terminal diagnosis and, if possible, to document end-of-life wishes in an advance directive such as a living will.

However, life happens and it’s not always possible to begin discussing these topics beforehand. If you find yourself in this situation, start the conversation as soon as possible after a prognosis of six months or less life expectancy.

The best-case scenario is that the patient has begun to consider the options and starts the conversation and process with a family member or clinician. This will ease the anxiety of all involved.

Unfortunately, many patients and even health care providers are reluctant to discuss the subject of end-of-life planning, so the responsibility to bring it up will likely fall on a family member or loved one. If this is the case:

• Enlist other trusted family members to participate in the conversation if possible.
• If you feel that you’ll need support from outside the family, enlist a trusted physician, social worker or clergy member to participate in the conversation.
• Educate yourself and all involved about hospice and the decisions at hand.
• Think of the optimal time and place to begin the conversation, preferably in a private, relaxed setting free of distractions.
• Listen for cues from the patient to initiate the conversation, such as complaints about hospitalizations, treatment-related pain or discomfort, or general fatigue from being ill.
• Have conversation starters prepared. They should be as benign as possible to maintain the emotional equilibrium of those involved. For example, “Your treatment seems to be taking a toll on you lately Dad,” or “Mom, you seem down after that last trip to the hospital.”
• If the patient is resistant to discussing the issue, don’t push them. Wait for another opportunity or for them to follow up on your lead.

What to discuss when considering hospice

Before diving into specific questions, it’s helpful to understand how to talk about hospice care in a way that respects everyone’s emotions and supports open communication. Plan an outline of the conversation to keep things on track. There are many questions to consider in this critical decision, including but not limited to:

• Does the patient want to continue curative treatment even if the chances for cure are low?
• Does the patient wish to be free of the side effects that occur from treatment?
• Would the patient prefer palliative (comfort and pain-relieving) treatments to curative treatments?
• How does the patient feel about the possibility of more hospitalizations?
• Would the patient prefer to spend their remaining time at home, rather than in a hospital or a skilled nursing facility?
• Would the patient give up the minimal chance of curing their condition if it could lead to an enhanced quality of life?
• Would the patient like the opportunity to spend more time with family and loved ones in a comfortable and secure setting?

Benefits of hospice care

If the patient actively participates in the conversation, is open to discussing these issues, and seems open to alternatives, explain the benefits of home-based hospice care:

• The patient can spend their remaining time at home or in a home-like setting rather than a hospital or skilled nursing facility.
• The patient will be cared for by a team of specially trained clinicians dedicated to addressing their physical, social, emotional and spiritual needs.
• The patient will no longer have to endure the side effects, pain and discomfort of aggressive curative treatments.
• Caregivers will focus on managing the patient’s pain and making the patient as comfortable as possible.
• If possible, caregivers will help the patient continue to do their normal activities and hobbies.
• The patient will have more opportunities to connect with family members, friends and other loved ones in a comfortable setting.
• Finally, emphasize that a decision to enter hospice is non-binding, and if the patient is dissatisfied or wishes to resume curative treatment, they are free to do so as long as they can make and communicate their decision.

One last note: Even if the conversation reaches this point, it is best to manage your expectations. Don’t pressure the patient to make a final decision or express a strong opinion one way or another. Give them time to process the information and get more comfortable with the possibility of entering hospice. They will let you know when they are ready to talk again.

If you are the patient

Although most conversations about hospice are started by family members or clinicians, sometimes the patient takes the lead. If you have a serious illness, are of advanced age, or have been told that you have a limited life expectancy and are considering hospice, you may want to introduce the subject.

• If you’re uncertain how to talk about hospice care with your loved ones, speak to a trusted physician, nurse, social worker, or clergy member and ask that they inform the family of your wishes.
• If you feel that family members can engage in the conversation, call a family meeting in a comfortable, relaxed setting and make your preferences clear.
• Allow family members to express their opinions, feelings and fears, but do not change your decision on their behalf. You know best what is appropriate for you.
• If you are not yet eligible for hospice but would like to communicate your wishes in advance, document your end-of-life plan in an advance directive or living will.

Decisions about hospice and other end-of-life matters are deeply personal and you are the best person to determine what is right for you.