It is never easy to talk about dying. It is even more difficult to discuss the death of a loved one. However, it is an important discussion to have—especially when a loved one is diagnosed with a terminal illness. If we avoid the discussion or put it off, we risk never learning the wishes of our loved ones.

Talking about hospice care doesn’t have to be about losing hope or the imminent nature of death. It can actually be a very comforting discussion for caregivers, families, and the patient. 

Discussing end-of-life options can encompass various topics, from the need for life-sustaining measures to the music played at a funeral service. Many families find these conversations to be helpful in the initial stages of grief over a terminal diagnosis. It can provide solace and comfort to have decisions in place.

Hospice professionals suggest patients and families think about end-of-life care before a medical crisis occurs, if possible. As you begin approaching the conversation about hospice and end-of-life care, there are key things to remember. At Heart to Heart, we  provide guidance to help you, your family, and the patient have a productive discussion so everyone is on the same page.

Preparing for the end-of-life discussion

It is important to start preparing for, and having, end-of-life discussions early to give everyone involved time to thoroughly consider all the options. The longer you wait, the greater the chance the patient loses the cognitive or physical ability to have the conversation, or reaches a point where decisions must be rushed. 

The first thing to think about is when to have the discussion. Ideally, you can talk to the patient before receiving a terminal diagnosis. Just as advanced planning is often completed for financial and legal decisions, including medical decisions in this process can be extremely helpful.

If advanced planning is not possible, a great time to have these conversations is after talking with medical professionals. This doesn’t necessarily have to be after an official terminal diagnosis. Repeated trips to the emergency room or rehospitalizations, a steady decline in your loved one’s condition, or their refusing further treatment can all be signs that it is time to talk about hospice.

Medical professionals may also suggest hospice care during an evaluation or medical visit. Caregivers and families can take this opportunity to gather information from physicians about hospice options, logistics, Medicare coverage, and more. In these instances, we suggest that you request medical professionals speak frankly about diagnoses and options for care. They can provide information and even referrals to hospice or palliative care as appropriate.

How to talk about hospice with family

Once a patient becomes eligible for hospice, it is a good idea to gather the family to discuss the value of hospice care, what the patient and family can expect, and how everyone can  participate in helpful ways. 

You can choose to start the conversation with the rest of the family present or one-on-one with the patient. Asking other family members to join you in the discussion provides a more supportive atmosphere and the opportunity for the conversation to feel like a full family decision.

Talking with the patient first allows you to develop a plan centered on their wishes, and this can help guide the conversation with the family. This will also help allay the concerns of any family members who may be hesitant about moving forward with hospice or palliative care.

Either way, it is important to allow time for reflection and silence. This is another reason early discussions can be beneficial. If family members feel time is short and they are being pressured, the conversation can become tense and combative. Allowing them time to process, reflect, and even grieve can make discussions more productive and supportive. Here are some tips to help smooth over any concerns:

  • Provide family members with as much information as possible. If they will be assisting with costs related to the patient, provide them with details about what’s covered by traditional plans, Medicare, the VA, and more. 
  • Explain to them what hospice entails, who is on the hospice care team, and how they support the patient in their final days. 
  • Dispel myths surrounding hospice to provide a complete picture. Be as clear as possible in everyday, familial language. The more everyone understands, the better everyone can support the patient.

How to talk about hospice with the patient

Once you have all the information and support you need, you can begin the conversation with your loved one. In this conversation it is incredibly important to let the patient be the focus. Let their needs and wants guide the discussion. It can be easy to become overwhelmed and distracted by your own emotions.  Remember that it is your loved one’s final days you are planning, and that should be all that matters.

Have the conversation somewhere private and calm. 

Start by making sure the patient understands the reality of their condition. If they understand and know their condition is not curable, then you can ease into the conversation. You can say things like, “We could manage your care at home with hospice care,” or, “The last hospital stay was tough, and there are ways to avoid that again.”

If they seem to understand, then you can keep moving forward. Say to them something like, “Things are moving in a new direction, and I want to ask you about your hopes, fears, wishes, and what’s important to you.” Then give them the floor.

Try to stay open-minded as they describe what they want. It could be helpful to explain what hospice care is and ask about their understanding of hospice. Explaining their options will help them make informed decisions. Assure them you will do everything you can to honor their final wishes.

Everyone moves at their own pace. If they initially resist the conversation, be understanding. Do not judge or push. It is a lot to take in. If you can tell they aren’t feeling open, say that you can find another time to talk. This may also be a moment when having family with you can help facilitate the discussion. If the patient sees that their loved ones are fighting for them, it may make them more open to discussing end-of-life plans

Important questions to ask to develop an end-of-life plan

Here are some questions provided by the Hospice Foundation of America to prompt productive discussion surrounding end-of-life care:

  • What do you value most about your life?
  • If you were diagnosed with an illness that could not be cured, would you want to pursue every possible treatment, even those that diminished your quality of life? Would you want to stop curative efforts if they were unsuccessful?
  • If you were unable to eat or drink because of a terminal illness, would you want artificial nutrition (often called tube feeding) and hydration (intravenous fluids) even if they might not help you live longer?
  • Understanding that cardiopulmonary resuscitation (CPR) could result in broken bones and other medical problems, would you want CPR if you were dying from an illness and were extremely frail?
  • How do you feel about a lengthy hospitalization or extended time in a nursing home?
  • Do you want to die at home? Who do you want near you when you are dying?
  • How much pain is acceptable to you? Would you want to be pain-free even if it meant trading comfort for wakefulness or alertness?
  • What decisions about your care do you want to entrust to others, and who would you designate to make those decisions? Have you shared your care preferences with that person and taken steps to ensure they are recognized as a healthcare proxy (also known as a medical power of attorney), substitute decision-maker, or spokesperson?

Approaching hospice discussions with care 

These conversations are going to be difficult. Everyone involved will be dealing with large and complex emotions, so stay open and empathetic with everyone involved, including  yourself. It is important to make sure you have all the information you can gather before starting the conversation as it will help keep it moving and productive. Also, it’s extremely important to  document the conversation. Having the patient’s wishes in writing will enable caregivers to make the best decisions for the patient.

One final thing: the hospice conversation is not a one-time event. Should a patient be hesitant and not agree to discuss options after an initial conversation, reintroduce the discussion at a later time, focusing on the patient’s evolving needs and goals. Together, you can make your loved one’s final days as pain-free and peaceful as possible.