Is Advance Care Planning A Remote Issue?

End-of-Life, death with dignityIt was a clear, bright morning late last month when I turned down a road towards a municipal building that strangely stood alone in the midst of a quiet residential area.  I live not far away in Washington, DC but Loudoun County feels a world away. My business for the day brought me to this location. It was the site where Senator Mark Warner convened a roundtable conversation of end-of-life issues. I thought this building and Loudon County provided a strange symbol for end-of-life planning. They were each remote. A diverse cross-section of stakeholders gathered to discuss this topic that remains remote in relation to other issues of health and medicine.  Hospital executives, nurses, religious leaders, financial planners and advocates for patients made up the crowd seated around the tables. Excited to join the discussion along with my fellow board member and Malene Davis, the President and CEO, we represented Capital Caring. The senator shared his Senior Navigation and Planning Act that he was to introduce in Congress.  He clearly explained the goals of this legislation:

  1. Assist patients in articulating and documenting their values, goals and treatment preferences in end-of-life care.
  2. Assist patient-provider exploration of the full range of treatment options available.
  3. Facilitate providers in the planning of treatment consistent with the patient’s goals and values.

The discussion and feedback included an array of topics. We spent time discussing the need to make advance directives available in the electronic health/medical record. While studies show that providing hospice and palliative care earlier in catastrophic illness results in positive health outcomes, current reimbursement still requires patients to abandon curative treatment in order to receive palliative care. Interpretation of today’s laws and policies also make it difficult for providers to honor a patient’s wishes.  For example, HIPAA regulations preclude medical conversations with family members. The result is extremely challenging to the medical decision-making process at the end-of-life.

A patient advocate highlighted the importance of the health care proxy and the need to educate people on how to choose one. A nurse spoke about the power of language and suggested reframing advance care to life care planning.  Death is certainly a part of life; it’s the ultimate culmination. The discussion repeatedly re-examined a poignant question, how do we normalize conversations around the dying process.

As a participant from the faith community explained, “we’re pretty good in getting people through life and tell them what will happen after life but” not at all equipped to discuss the actual dying process.

It’s difficult to have the conversations that educate health care providers and the public at large about advanced care when we shun the topic altogether. Senator Warner encouraged us as leaders in this community to organize ourselves around the goal of advancing a public service campaign for this specific purpose.

Attending Senator Warner’s roundtable discussion underscored for me the importance of National Healthcare Decisions Day for raising awareness and working towards transforming cultural attitudes. Taking advantage of such campaigns and expanding upon them will be necessary to normalize the advance planning discussion so this issue is no longer quite so remote.

The Health Communications Health Literacy and Social Sciences (#HCHLITSS) tweet chat will be discussing advanced care planning Thursday, April 18 at 8pm ET 7pm CT.  Please join us.

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