Conversation Script: Talking to Patients About Hospice

Clinicians are often faced with talking with patients with serious illness about hospice. In some cases, the clinician will have a longstanding relationship with the patient, while others may be talking for the first time. This communication script highlights skills and techniques that will help foster meaningful conversations regardless of the existing relationship.

Any conversation about transitioning to hospice should keenly focus on the needs and goals of the patient and family. The process of listening and clarifying patients’ wishes frames the rest of the discussion.

Below are step-wise tips and a sample conversation script to foster comfortable, productive dialogue for the hospice conversation.

1. Ensure your understanding of the Medicare Hospice Benefit before discussing hospice with patients.

2. For any patient with a diagnosis of a serious illness, use every visit to:

• Build trust by listening to the patient’s story.
• Ask questions to understand the patient’s values and care preferences.
• Match values and preferences to the appropriate therapy or services. This process lays the foundation for conversations about hospice, if and when they become appropriate.

3. When a patient becomes eligible for hospice services, suggest holding a family meeting to discuss the Medicare Hospice Benefit and the value of hospice care (ideally in-person, but use video or phone call if needed):

• Use the patient’s advance directive to help the conversation focus on goals and plan.
• Use communication techniques that help ease the distress felt by patients and health care professionals during difficult conversations. See CAPC’s communication skills curriculum for practical tips on conversations about prognosis, advance care planning, and goals of care.
• Avoid medical terminology. Opt for language one uses when talking to a friend or relative. Allow for silence and reflection.

4. Let the patient’s needs be the focus of the conversation:

• Start by asking the patient and family about their understanding of the patient’s medical condition. If they understand the condition is not curable, move the conversation forward with phrases such as, “We are in a different place now. Knowing this, what is most important to you?”
• Once wishes are clarified, describe the types of support that would address current needs, such as frequent visits from a nurse or additional help at home. It can be helpful to describe relevant features of the service before naming it, such as “A program covered by your insurance that will cover the costs of a team of professionals and their services, including weekly home nursing, doctor or nurse practitioner visits if needed; your lung and breathing medications; and any medical equipment you may need. The team could also include a nursing assistant to help with some tasks like bathing or feeding, and a social worker to see how everyone is managing and to make sure you have all the equipment you need. The program is called hospice.”
• Explore the patient/family’s familiarity with and perceptions of hospice. Be prepared to respond to an emotional reaction to your recommendation and to then clarify misunderstandings about how the service works.
• Recognize that race and culture can impact patient and family attitudes about hospice. For example, our history of systemic racism and medical mistreatment in U.S. health care has led many Black patients to distrust hospice care. Skilled communication, framing the hospice conversation around the patient's needs and values, and respecting decision-making preferences with families can help to facilitate trust.
• If hospice care is aligned with the patient’s needs and values, recommend hospice using language that connects back to what is important to the patient. For example, “What I heard you say is that staying in your house and avoiding time in the hospital, having the right medications to manage your symptoms, and having the best quality of life possible is most important to you now. I recommend hospice because that team can provide you with the maximum support at home. That and you are entitled to—and have paid for—the hospice benefit as Medicare beneficiaries.”
• Describe the hospice benefit package, including:
  • No cost-sharing for patient
  • Full team including volunteer services
  • 24/7 on-call support and regular nurse visits
  • Home-delivered supplies, medications, and equipment
  • Hospice supports family or other hired caregivers to take care of patients. It does not include 24-hour care in the home.
• Remind patients and families that hospice care is not a one-way street; patients can change their minds and dis-enroll if their goals change, or if hospice is not meeting their needs.

This primary care clinician is about to talk to a patient, Mr. J, about hospice.

Mr. J is a 75-year-old man with COPD. He had a recent hospitalization with an exacerbation of COPD that required ventilator support and rehabilitation. He followed up with his primary care team, and they revised his goals of care. He returns today with his wife for further discussions on his COPD and goals of care given some recent difficulties he is having at home. After discussing the case with his pulmonologist, the conclusion was that his prognosis was 6 months or less, and it would be best to introduce hospice to him and his family.

Clinician: Hello, nice to see you both again, thank you for coming in. I thought it would be best that we meet to talk things over.
Mr. J: Hi. I am super nervous today. Things have not been going that well recently.

Clinician: Tell me more about that. What do you think is happening with your COPD?
Mr. J: It's bad. I am exhausted. I am sick of getting poked and prodded, and I never want to be on that machine again. My whole life is about my breathing… I need to take that medicine to help me breathe almost every 2 hours lately. It works, but I know its getting worse and I am so sick of doctors and hospitals.

Clinician: You have been through so much. We are in a different place now for sure. (Pause)
Mr. J: I know. Time is running out.

Clinician: Given where things are with your health, what is most important to you now?
Mr. J: If my breathing is going to keep getting worse, I want to make sure I always have the right medications to help. I am so scared of feeling like I can’t breathe and needing to go to the hospital again.

Clinician: Sounds like making sure you have the right tools to treat shortness of breath is very important to you.
Mr. J: Yeah. I have had a great last couple of months, but things seem to be getting worse lately and I need more help every day. I keep having to go back and forth to the hospital and I’m not sure it’s even helping. I just want the time I have left to be the best it can be, not wasting time in the hospital.

Clinician: Avoiding time in the hospital is a priority for you now.
Mr. J: It is. I really want to be home, but I don’t want my wife and kids to be burdened taking care of me.
Mrs. J: I keep telling him he is not a burden but he doesn’t listen. We have a lot of family and friends to pitch in when we need it.

Clinician: You are both doing an amazing job. Caregiving can be difficult work, and there are programs in your community that can help you BOTH in your home, would you like to hear more about that?
Mr. J: That sounds expensive and honestly, we just don’t have the money.
Mrs. J: I want the best for him.

Clinician: What I am talking about is a program covered by your insurance and will cover the costs of weekly home nursing, doctor or nurse practitioner visits if needed, your lung and breathing medications, and any medical equipment you may need. The team of professionals could also include personal care assistants if you need them, and visits from a social worker to see how you are doing and to make sure that you have all the equipment that you need. The program is called hospice.
Mr. J: Hospice? I don’t want that. Isn’t that where they send folks when you’ve given up on them? And they just give you morphine to make you die? Look, only God knows when it’s my time and I don’t want y’all giving up on me.

Clinician: It sounds like your faith is an important source of support for you.
Mr. J: Yes it is.

Clinician: And you are right, none of us know exactly how much time you have. That uncertainty can sometimes be unsettling. (Pause) I am so sorry that that has been your experience or impression of Hospice. I would never give up or abandon you. We are going to continue working with you throughout this path to figure out the next steps together and to make sure that you are getting the best possible care. (Pause) Can I tell you a little bit more about why I am suggesting hospice?
Mr. J: Sure.

Clinician: Hospice is not a destination, it is an insurance benefit that you have paid for your whole working life, and that benefit can provide you everything you need to be home, be comfortable and help you and your wife and family make the most of the time you have left. Hospice won’t do anything to hasten your death. And honestly, I am suggesting it because it’s the most amount of support aimed at exactly the things that you have told me are important to you.
Mr. J: What if I don’t like it or change my mind?

Clinician: You make the decisions on all matters related to your health and can discontinue hospice at any time if it is not working for you – however there is no other program that I know of that can or will provide the level of care that hospice can that is covered by insurance. I want the best for you, and I believe that this is the best care for you at this time.
Mr. J: So, you are saying you think this is a good idea?

Clinician: What I heard you say is that staying in your house and avoiding time in the hospital, having the right medications to manage your symptoms, and having the best quality of life possible is most important to you now. I recommend hospice because that team can provide you with the maximum support at home.
Mrs. J: Can you tell us more about what hospice might look like for us?

Clinician: The hospice benefit package includes:

• A full team including doctors, nurses, social work, chaplains, and volunteers
• 24/7 on-call support and regular nurse visits
• Home-delivered supplies, medications, and equipment
• No out of pocket costs to you or your family

Mr. J: That is a lot. I’d like to talk to my family but that sounds pretty good. What happens next?

Clinician: Our office can make the referral to hospice and have them come present services to you and your family. There is no obligation, and if you have further questions we could meet again or talk by phone.

Having the hospice conversation is not a one-time event. Should a patient decide not to enroll after an initial conversation, reintroduce the discussion at subsequent visits, focusing on the patient’s evolving needs and goals.