Communication Barriers & Strategies for Talking About Death

Death is a topic that many people find difficult to discuss, yet it’s an inevitable part of life. Having open and honest conversations about death and end-of-life wishes with loved ones can provide comfort when the death experience happens, and tools such as conversation starters, books, games and discussing an advance directive can help. When talking about dying with your loved ones, planning ahead and choosing a comfortable and private place is ideal rather than “springing” the topic on someone without warning. It’s also helpful to think about what specifics you’d like to discuss, along with end-of-life preferences of your own you’d like to share.

Conversation starters about death and dying

Sometimes, all it takes is a simple prompt to get the conversation going. According to Hospice of Red River Valley (HRRV), some jumping-off points include:

• Reflecting on a recent diagnosis, hospitalization or death of a loved one — a helpful opening phrase from HRRV is: “I was thinking about what happened, and it made me realize ______.”
• If you’ve come to some conclusions about your own end-of-life preferences, you can share those and ask what their own would be. 
• You can mention that you’re thinking about the future and would like some help planning. 
• There’s also a helpful step-by-step guide from The Conversation Project you can refer to.

Bethesda Senior Living encourages being open about your end-of-life wishes — putting them down in writing and even preplanning your funeral. Sharing this information with more than one person is a helpful practice. Also:

• Try to set emotions aside in favor of practicality when it comes to discussing things like where one might want to spend their last days and funeral arrangements.
• Be willing to venture into difficult territory about forgiveness, if necessary, to avoid regrets after you or a loved one has died.

Books about the subject of death and grief

There are many widely varying books that can help you think about death and dying. If you resonate particularly strongly with one or more, you can discuss some of your favorite ideas from the book with loved ones or even share a copy. Hospice UK suggests some popular choices such as:

• Kathryn Mannix, With the End in Mind
• Atul Gawande, Being Mortal
• Sherwin B. Nuland, How We Die
• Max Porter, Grief is the Thing With Feathers
• Paul Kalanithi, When Breath Becomes Air 

And for children:

• Alec Aspinwall, I’ll be the Water

Games that open discussions about death

There are many games on the market that aim to open up conversations about death and end-of-life, which we discuss in detail in this article in our magazine.

Advance directive conversations

Consider creating an advance directive, which details exactly what you’d like to happen in the case you become seriously ill or incapacitated. You can share this document with loved ones to begin a conversation about death and dying and your preferences around end-of-life care.  

Sources

“5 Tips for Talking About Dying With Your Loved Ones”. Bethesda Senior Living Community. https://www.bethesdaseniorliving.com/senior-resources/5-tips-for-talking-about-dying-with-your-loved-ones

“Get Started”. The Conversation Project. https://theconversationproject.org/get-started

“Books to help us think about death, dying and grief”. Hospice UK. https://www.hospiceuk.org/latest-from-hospice-uk/books-help-us-think-about-death-dying-and-grief 

“10 Fun Games to Help You Talk About End-of-Life Care.” The Conversation Project. https://theconversationproject.org/tcp-blog/death-is-not-a-game-well-sometimes-it-is/

“12 Additional Must Read Books About Death and End-of-Life Care”. The Conversation Project. https://theconversationproject.org/tcp-blog/12-must-read-books-about-death-and-end-of-life-care/ 

“10 Must Reads About Death and End-Of-Life Care”. The Conversation Project. https://theconversationproject.org/tcp-blog/10-must-reads-about-death-and-end-of-life-care/ 

Some of the most effective methods for communicating values and treatment goals at the end of life include engaging in honest discussions regarding preferences, maintaining appropriate legal documentation, and collaborating with a multidisciplinary team of healthcare professionals to facilitate informed decisions. Decisions regarding values and treatment goals may shift during different phases of life or following major life events, so it is equally important to take time to reflect on your preferences, beliefs and views about death and dying prior to initiating these interactions.

Starting the conversation with friends, family, and healthcare professionals is often the first step towards effectively communicating values and treatment goals. Although this can be a difficult conversation to have with loved ones, it is an important conversation that should not be postponed or avoided. To move beyond abstract ideas, you can use guided conversations, such as card games that prompt discussions about what matters most, or scale questions (e.g., “On a scale of 1 to 10, how important is it to you to be at home?”). As you share your preferences with them, focus on explaining why you have these preferences and why they are important or meaningful to you. Taking the additional time to walk your loved ones through your thought process and the rationale behind your requests can help them understand why these wishes need to be honored both during your dying process and after your death.

Another important aspect of communicating your values and treatment goals is to ensure they are effectively and accurately documented through advance directives. Documents such as living wills or power of attorney can establish clear expectations regarding your preferences for end-of-life care, medical interventions, and life-sustaining treatments. For immediate medical decisions, a Physician Orders for Life-Sustaining Treatment (POLST) form translates your goals into actionable medical orders. In regions where it is legal, you may also explore conversations with your care team about Medical Aid in Dying (MAID). Do Not Resuscitate (DNR) orders are also important to have readily available if they align with your goals. It is important to update these documents as needed if any changes to your values or treatment goals occur over time. You will find that having these documents available will not only provide you with peace of mind regarding your preferences, it will also reassure your loved ones that they can make informed decisions during a difficult time.

Collaborating directly with the multidisciplinary team of healthcare professionals who will be responsible for your care is another recommended option for effective communication. Your care team might be physicians, specialists, social workers, spiritual care providers, and many other individuals who will use their expertise to ensure you have a dignified end-of-life experience. Working together can help them to personalize your care as death becomes more imminent and help them understand how to best support you during your final weeks, days, and hours.

There are several barriers to having effective conversations with healthcare professionals regarding the end of life. Some of the common barriers to these conversations include:

• Lack of training and education 
• Fear of impact on patients and caretakers 
• Challenges in navigating patient readiness to discuss the end of life
• Prognostic uncertainty 
• Lack of familiarity in having EOL conversations 

Healthcare professionals may struggle with having end-of-life conversations due to feeling unequipped to facilitate the discussion. The overall discomfort and stigma associated with the topic of death can make it difficult to initiate the conversation. It can be equally challenging to navigate this sensitive topic due to the intense emotions that it can provoke among patients and their loved ones. Additionally, death is typically perceived as a negative outcome in medical settings, and many physicians do not receive enough training in how to discuss the topic with patients and their loved ones. 

Another barrier that is frequently overlooked is the lack of time and resources in most healthcare settings. Healthcare professionals often have significantly limited time during and between appointments with patients, so they aren’t able to dedicate as much time to an in-depth conversation about end-of-life concerns. As the volume of patients needing care and observation increases throughout the day, the amount of time that can be dedicated to each patient gradually decreases to ensure that other patients can be seen promptly. 

Sometimes cultural and religious beliefs can be a barrier to end-of-life conversations as well. Different cultures and religions have unique perspectives regarding death and dying, which can influence the decisions that patients make regarding end-of-life care. These decisions and preferences may not entirely align with the recommendations that a healthcare professional might make when developing end-of-life care plans with the patient. However, it is important for healthcare professionals to be sensitive to the needs and preferences of their patients and to create an environment that is supportive of their wishes and goals.

Although there are numerous barriers to having effective end-of-life conversations with healthcare professionals, many of these barriers can be overcome with the provision of additional education and training. This applies not only to the healthcare professionals who need to navigate these conversations, but also to the patients and their loved ones who often need to advocate for their preferences in relation to end-of-life care. By fostering more open dialogue regarding death and dying, healthcare professionals can ensure that patients receive appropriate care and support that aligns with their values and goals. 

Sources 

“Facilitators and Barriers for Initiating Conversations About End of Life”. Palliative Medicine Reports. https://pmc.ncbi.nlm.nih.gov/articles/PMC9805848/ 

“Exploring Barriers and Solutions to End-of-Life Conversations, Advance Care Planning”. ASCO Daily News. https://dailynews.ascopubs.org/do/exploring-barriers-and-solutions-end-of-life-conversations-advance-care-planning 

“Your Guide for Talking with a Healthcare Team”. The Conversation Project. https://theconversationproject.org/get-started#Your-Guide-for-Talking-with-a-Health-Care-Team