One of the most difficult conversations to have with patients is about the possibility of a life-limiting diagnosis.

Talking to patients and their families

The time to start talking about palliative care and hospice is before they are needed – to give families time to process information and talk through the decisions that might need to be made in the future.

But, many families are resistant to discussing end of life issues, wanting to “keep fighting” and not “give up hope.” Just saying the word “hospice” can cause a panic.

Here are some ideas on dealing with difficult conversations. Remember, Kansas City Hospice & Palliative Care can provide assistance in this area. Our teams are highly skilled in walking families through the options and we can provide a social worker, chaplain or other professional as needed for complicated family situations.

Introducing difficult topics

One way to introduce these topics is to ask questions that will help guide you in making recommendations for treatment. Explain that you need to understand your patient’s outlook, values and family dynamics so that you can better help them cope with their illness:

• Are you able to discuss things with your spouse, your parents, your children?
• Are there any treatments you would absolutely not want to endure?
• What is more important to you, feeling good for as long as possible or pursuing every possible cure?
• How important is it for you to have quality time with your family?
• If something happened that you could not speak for yourself, who do you want to speak for you and make medical decisions?
• Does that person know what you would want or not want?
• Have you put your medical directives in writing?
• How much time are you willing to spend in the hospital?
• If you could be treated at home, is that what you would want?
• How much support are you going to have from your family and friends?
• Are you worried about how your family is going to cope with your illness?

If you can guide the patient and family to start discussions before a crisis, it will be much easier on both the family and the medical team – get everyone on the same page.

Facts plus feelings

Anytime you are discussing serious illness and options for care, it’s important to deliver the medical facts, but also to discuss the emotions that come into play: fear, anger, frustration or anxiety. Encourage the family to support each other and to discuss their emotions, to be there for each other.

Remember that patients have a hard time asking the tough questions. It’s important for you to help initiate these conversations. As you discuss prognosis, also discuss quality of life and ask them what they think.

While you can’t always provide definite answers, you can help remove misconceptions and refocus energy on things that really will make a difference.

Leading into a hospice discussion

Now that palliative care is more readily available, it offers a bridge between the beginning of an illness and hospice. Palliative care offers the ability to stay out of the hospital and away from ERs and keep people comfortable at home for months or years.

It offers the same great care and family support that hospice offers, but without the terminal diagnosis. Patients find it much more acceptable and they do really well in palliative care. Transition from palliative care to hospice is always an option.

The most important thing to keep in mind when presenting hospice to a patient or family is that it’s just one of their options. Knowing about what hospice really is and dispelling myths can give an alternative that most people don’t explore until very late in treatment.

We find it helpful to remind people that when they choose hospice, they can always change their mind. If their condition changes or if a new treatment becomes available, they just choose to leave hospice care and can come back later if that’s what they desire.

When your patient is no longer able to make decisions

When dealing with a medical crisis and the patient is not able to speak for themselves or make decisions, a family conference must take place. Even if advance directives are in place, family dynamics can be very difficult. Emotions run high and even carefully made prior decisions may be questioned.

Your focus will be to try to get everyone on the same page. Make sure they understand the medical situation. Bring both family and medical team together to help choose options that fit with the patient’s values and what they would want.

• Prepare – meet with your team to get on same page, sharing what you know about the patient and family, and agreeing on key points to be presented.
• Begin – find a private place, introduce everyone and explain the current situation.
• Pace – break it down into understandable pieces instead of jumping to the big picture, use language they can understand and pause frequently for questions.
• Summarize – bring it all together with the big picture, assess the family’s perspectives and look for a shared understanding.
• Empathize – when they understand the situation the family may react with emotions. Acknowledge their emotions and make them feel understood. This helps them process the information and establishes trust.
• Prioritize – ask about your patient’s values? “Tell me about him, what’s important to him? If he could talk, what would he want to do?” That puts them in his shoes and helps them focus on coming to a consensus despite their own personal feelings.
• Guide – come up with a plan that matches the values you have heard expressed. If the family is uncertain or disagrees, make recommendations. Let each person air their views and make sure they feel heard.
• Document – summarize the discussion in the medical record.

A successful meeting means that

• The family was able to say what’s important and to feel heard.
• The family knows that you will honor their loved one’s values while dealing with the reality of the situation.
• You fees better to know that the plan of care is consistent with your patient’s values.
• You have had the opportunity to build skills.

Some meetings are more complicated and some family situations may require another level of skill. Kansas City Hospice & Palliative Care can provide assistance in this area. Our teams are highly skilled in walking families through the options and we can provide a social worker, chaplain or other professional as needed for complicated family situations.

Resources

VALUE: Guidelines for an End-of-Life Family Conference, see page 3 of this newsletter from the Center for Hospice & Palliative Care.

Knowing How Doctors Die Can Change End-Of-Life Discussions, NPR, July 6, 2015