Having the hospice conversation: How to talk to loved ones about hospice

You’ve probably heard the term “hospice” before. You may have even had experiences throughout your life that involve hospice care. But do you know how to talk to your loved ones about hospice?

The public’s view on hospice care

According to KFF, 7 in 10 Americans at least know a little about hospice care, yet 69% of Americans generally avoid talking about death. Given that discrepancy, it’s extremely important to know your loved one’s wishes for end-of-life care, including how to have the hospice conversation if necessary.

In an ideal world, each person would have their end-of-life preferences documented ahead of time, leaving their family to know their specific wants and wishes. However, it doesn’t often happen this way. In fact, according to a study from NORC at the University of Chicago, only 22% of the American public has documented their wishes for end-of-life care. 

It is more common for those who are 75 and older or facing a terminal illness to document their wishes. Whether you find yourself wanting to know your loved one’s plan before or after they face a critical moment is up to you, but it may help to know when loved ones might be ready for a serious conversation about hospice.

How to know when loved ones are ready for the hospice conversation

It’s important to know your loved one’s wishes for the end of life even before they’re told they have a terminal prognosis, or less than six months to live.

Hospice care is intended for people who are diagnosed with a life-limiting illness and a prognosis of six months or less.

Some indicators that it may be time to begin hospice care are:

• Functional decline
• Extreme weight loss
• Multiple conditions and diseases
• Increased infections
• Increased hospitalizations
• Dependence in most activities of daily living (ADLs)

Read more about hospice indicators here.

How to talk to loved ones about hospice: Start the conversation early

As mentioned, you don’t have to wait until your loved one receives a diagnosis to begin talking about hospice. In fact, many patients or loved ones wish they had started the hospice conversation way sooner so that they could use the benefits of the hospice care team earlier.

But if you do choose to wait until a diagnosis or prognosis, it’s best to start the conversation as early as possible, even if it may be a hard subject to approach.

The National Hospice and Palliative Care Organization (NHPCO) recommends introducing the topic in a broad sense. Start by getting to know your loved ones’ personal concerns about their time left, what values they cherish the most and their overall view toward death.

Having the hospice conversation with loved ones

Once you’re ready to have the hospice conversation with your loved ones, you can follow these outlined conversation guides or prompts.

Make sure they understand what hospice care is.

There are often a lot of misconceptions that surround hospice and many people have questions about what hospice is. Hospice is not a place, but rather a philosophy of care. It focuses on providing compassionate care so people can live as fully and comfortably as possible in the last stages of their disease. 

End-of-life care does not try to hasten or postpone death. Instead, it provides physical, psychological, spiritual and emotional support to the patient and their loved ones. Read more here.

Learn where your loved one wants to receive care.

Hospice can be started from wherever a patient calls home, whether in a home or assisted living facility. Ask your loved one their preferred environment to receive care and be sure to be specific.

For example, if they want to receive care at home, do they mean their home or your home? Do they expect anyone else to stay with them during this time? This will help you plan accordingly.

Ask if your loved one wants heroic interventions at the end of life.

This includes using ventilators, feeding tubes, dialysis, etc. to keep them alive. Determine if they are comfortable with all heroic interventions or would prefer some to others.

Discuss advance directives and DNRs.

Advance directives are documents such as living wills, durable powers of attorney for health care and written medical orders that state what a patient would want if they cannot choose for themself.

It’s important to understand your loved one’s preferences for resuscitation as well.

A document such as a Do-Not-Resuscitate-Order (DNR) will help outline your loved one’s preference and will be posted in their room to prevent confusion and mistakes made along the care team. A DNR tells physicians not to restore a patient’s breathing or restart their heart in the event of cardiac arrest.

Learn who your loved one wants to be involved in their care.

The hospice care team is made up of individuals who work across disciplines to provide care and support. The Medicare-required core interdisciplinary team is the attending physician, registered nurse, social worker and chaplain. However, the patient can choose to receive support from hospice aides, bereavement specialists and volunteers as well.

Additionally, it’s important to discuss what family members they’d like around to help or support their care. Do they want visitors? Do they just want one family member to handle appointment scheduling and tasks? Clarifying these questions will help to ensure your loved one’s wishes are being followed. 

Learn if your loved one wants spiritual care.

As mentioned, hospice care includes a chaplain. Hospice chaplains are experienced professionals who plan, assess and care for a patient’s spiritual needs – no matter their religion – during their end-of-life journey. They provide counseling to both patients and their loved ones, consultation to the clergy community and assistance with memorial preparations.

Some patients choose not to receive spiritual care, as that is not an important piece of their life. Talk to your loved one and determine what would bring them the most comfort.

Ask if there is anything else that really matters to them that they would like at the end of life.

For some hospice patients, what matters most is that they are kept comfortable. For others, it’s that their kids are prepared to handle their death. Each person has individual wants and wishes as they begin hospice care.

Ask your loved one if there’s anything else that would make a difference to them as they near the end of life. Try and tie this back to their personal concerns and values from your initial introduction to the conversation. Once you learn what matters most, you can ensure your loved one’s wishes are met.

At Enhabit Home Health & Hospice, we care about learning what matters most to each patient and building care plans around that, regardless of what the patient’s last wish may be. If you or your loved one are ready to speak with hospice care professionals or have any questions about the process, don’t hesitate to contact us today.