Dealing with Difficult Questions: What End-of-Life Planning Can Teach us about Managed Retreat

By: Kara Runsten, CBI Climigration Associate

One surprising connection made during the CBI-hosted workshop Community Transformation at the Water’s Edge in December 2015 was the possible similarities between managed retreat planning and end-of-life decision-making. While the two topics might seem quite different, there is much the climate change adaptation world can learn from physicians, nurses, patients, and families dealing with this most sensitive period of life transition.

Up to 80 percent of nursing home residents do not have documented treatment wishes in their medical records. This limited amount of dialogue and planning is common for difficult questions and mirrors the lack of conversation about managed retreat in coastal communities. Finding ways to assess the situation and facilitate conversation is essential to planning for the future. 

An article titled “Facilitating End-of-Life Decision-Making Strategies for Communicating and Assessing”[1] serves as an access point for comparison between the two issues. The article describes healthcare provider behaviors that facilitate or hinder end-of-life decision-making by patients and their families. Below, I summarize some main takeaways from the article and how they relate to coastal retreat.

Communication

The study found that opening the lines of communication early was one of the most important actions providers could take. This included:

1.     Being willing: The provider should open the lines of communication for end-of-life decision-making to occur. Patients whose providers shy away from the topic or delay starting the conversation often take on burdensome treatments and/or do not have enough time to prepare for death.

The same is true for managed retreat. Government and military officials, non-profit leaders, and local community leaders can create the space for the discussion and encourage communities to talk about this adaptation method as a credible option.

2.     Being clear: Providers who used clear words to identify the issue, such as “death” and “dying” were seen as more successful at facilitating end-of-life planning. Providers who used unclear language or euphemisms often led patients and families to hold onto false hope that delayed end-of-life planning.

Being clear about climate change and its implications for a community is important. Sensitive language is appropriate, and one should be cognizant of the impact of language choices that are culturally appropriate, but clarity and simplicity facilitates a productive discussion.

3.     Clarifying prognosis of goals and treatment: It is helpful to clarify the goals and expectations for treatment. Sugarcoating potential results of a treatment could lead patients and families to delay end-of-life planning.

Similarly, helping communities understand the risks they take on by staying in the same climate-vulnerable location as well as the various options for mitigating and/or adapting to these risks is important when planning for the future.

Assessment

Successful providers were also experienced at assessing situations and using these assessments to spark the planning process. Key traits included:

1.     Recognizing deteriorating conditions: Successful providers were able to recognize when a patient’s phase of illness turns from chronic to terminal.

Community leaders may play this role in coastal communities. By recognizing a deteriorating condition and initiating dialogue, they can start building social capital within the community and begin this important conversation.

2.     Assessing understanding: Ensuring the patient and family members have a clear understanding of the full picture of the situation is important to facilitating dialogue about mortality.

Likewise, communities may be more likely to consider retreat as an option if they understand the nature of the changes they are facing, including the likely frequency of storms and the long-term effects of sea level rise. 

3.     Assessing end-of-life wishes: Successful providers ask patients directly about their wishes in an end-of-life situation.

Communities should talk openly about the nature of the transition they want. When, how, with whome, and under what circumstances the transition should take place are all issues that should not be imposed, and should align with community members' interests. Also, people should be invited to envision what they want to leave behind as a legacy - how they want the place they are leaving to be remembered and used or enjoyed in the future. 

4.     Assessing patient and family goals and expectations: Making sure everyone is on the same page aids planning and sets appropriate expectations.

Managing expectations, being open and transparent with everyone who might be affected, and thoroughly evaluating the benefits and costs of retreat as an option can help ensure such a strategy’s ultimate success. Unrealistic expectations can lead to surprises and unsuccessful implementation.

[1] Norton, S. A., & Talerico, K. A. (2000). Facilitating End-of-Life Decision-Making: Strategies for Communicating and Assessing. Journal of Gerontological Nursing, 26(9), 6-9.

 

Kara Runsten is a Master of City Planning candidate at MIT's Department of Urban Studies and Planning focusing on climate change adaptation, environmental dispute resolution, and stakeholder engagement.

Kara Runsten is a Master of City Planning candidate at MIT's Department of Urban Studies and Planning focusing on climate change adaptation, environmental dispute resolution, and stakeholder engagement.