talking about hospice

No one wants to envision their dying moments. No one wants to picture a loved one dying, either.

But death is a part of life, and it’s important to have important conversations about hospice before it’s too late. Hospice can deliver comfort and peace of mind. Pre-planning and deciding what you want your dying process to look like and how you want to die is the greatest gift to those you love.

The average duration of hospice enrollment in 2018 for over 1.5 million Medicare patients was about 90 days while the median length of service was just 18 days, according to the National Hospice and Palliative Care Organization (NHPCO). That’s not a lot of time, but it may seem like an eternity when someone you love is hurting. Once you have a diagnosis or your physician has indicated that the end may be coming, that is the time to call hospice. The better the staff from hospice can know a person before they are actively in the dying process, the better they can personalize their care.

Too often, family members and care partner teams — consciously or subconsciously hoping to stave off the inevitable — wait too long to discuss end-of-life care. That can be a physically and emotionally painful mistake for everyone involved. So let’s prepare for the most comfortable and dignified treatment in those final moments. We urge developing and implementing a plan with your loved one now while emotions are calm and everyone can assess realities from a fresh perspective.

How to Discuss Hospice Care with Your Care Partner Team

Everyone must first understand that hospice care is not a surrender. It’s common for almost everyone to fear death — and to avoid acknowledging its inevitability. Hospice care is simply an often-necessary resource to ensure your elder’s wishes and comfort are considered as they go through the process of passing away. And, yes, it’s often a process lasting days, weeks or even months of euphoric ups and devastating downs.

Here are some great talking points:

Comfort Care

Most hospice cases involve terminal illnesses like cancer, organ failure and dementia. Unfortunately, dying moments often come with pain, sickness and overwhelming discomfort. Discuss these realities early within the care partner team to:

• Acknowledge that pain and sickness will likely be a factor,
• Allow the care recipient to express their pain management wishes,
• Consider everyone’s opinions and emotional needs, and
• Plan and mobilize resources for when the time comes.

A dying person may not be physically or mentally able to express what they need. Weighing all options and making decisions before health crises strike will eliminate needless confusion in an emotional end-of-life scenario. Your care partner team will feel empowered by following a person-focused plan with steps agreed upon long before.

You’ll know your mother, uncle, husband or whomever agreed to a certain pain medication, without the “they wouldn’t have wanted that” aggravation and ambiguity.

Ice-breaker: “Mom, we know you don’t like medications, but tell us what makes you feel better when you’re in pain.” Centering the conversation on what makes her feel better prompts her to open up and express what she would prefer. It may be morphine — or maybe even a shot of Irish whiskey.

Home Environment

Many individuals choose to receive hospice care where they’re most comfortable — at home. They’ve often lived there for many years, raised families and collected happy memories. In many end-of-life cases, they’re enduring considerable pain and illness with only those memories to lift their spirits.

It’s only fitting they pass away in peace where and how they choose.   

Home care accounted for 98.2 percent of hospice care provided in 2018, according to NHPCO.  Included in this data set are individuals who received care in their home, assisted living facility or care community.

A great life care plan should include where the person wants to be and the environment they choose for their final days. Some simply want music and art around them, a comfortable bed with fresh sheets, and soft pillows. Others are selective about whom they wish to see and when in their final days. Some anticipate their physical condition and appearance at the end may be unattractive or uncomfortable for loved ones. Naturally, they may wish only close immediate family members to enter their room or home.

Hospice agencies work with the care team to create the desired home environment.

Ice-breaker: “Uncle Greg, I remember you said The Beatles were your favorite band growing up. What’s your favorite album?” He’ll likely open up about Sgt. Pepper or the White Album, and the conversation may flow naturally to a particular song he’d like to hear in the end.

Spiritual and Emotional Care

People don’t necessarily have to be religious to require spiritual and emotional care at end of life. The same goes for their care partners. Approaching the end, many embrace spirituality and a wholesome environment in preparation for what awaits “on the other side.” A care recipient may desire certain hymns, prayers or ceremonies. They may want a certain priest, pastor, rabbi, imam, shaman, spiritual adviser or other clergy member to deliver services.

Care partners may similarly require counseling or spiritual services, whether they’re family or close friends. End-of-life care can be stressful, scary and uncertain for everyone involved. Establishing ritual needs ahead of time often makes the entire care circle feel comforted and less alone. Having clergy present can make sense of the “grand design” by higher powers known by many names, especially when it seems senseless to say goodbye. 

Ice-breaker: “Sis, what’s that verse in Psalms you always enjoyed so much?” She may recite the verse word-for-word and perhaps recall a local pastor who made perfect sense of its message. Such a dialog may lead to final prayers and who should say them.

Are You Ready to Have the Hospice Conversation?

Developing the final part of a life care plan can be heartbreaking for everyone. But it’s critical to address the end-of-life care that may be necessary to relieve suffering and provide support.

You could even include a hospice agency and employees in your care partner team. They’ll enjoy truly getting to know the individual and their loved ones before things get bad. As a result, they’ll know how to better develop person-centered care around your own wishes, personalities and needs.

Don’t wait until the crisis hits. Have the discussion early. You don’t need all the answers in one sitting. A loved one understandably may not want to discuss their final days. But we know some great ice-breakers to usher conversations about hospice along and piece together the puzzle of final wishes. If you need help, Caregiver Support and Resources, LLC can help you to build a plan today and refer you to a great hospice agency tomorrow.