As I assume everyone involved in health care in the US knows by now, the Institute of Medicine (IOM) recently issued its latest report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Any time the IOM issues a report of this depth, it is news. However, this one may be more newsworthy than most because it deals with an experience that will impinge on the life of every human being- dying.
First, it is critical to thank all of those involved in producing this most thoughtful and thorough document. Having been on consensus panels of much smaller magnitude than this, I can begin to guess at the effort and attention to detail required here. Even in a 500+ page document every word is important and my experience is that being a part of one of these panels often seems to produce more critique about using the wrong words or leaving out words than appreciation for the phenomenal contribution to the cause. And we tend to forget that all of these people have day jobs. We owe these panelists and reviewers a tremendous debt.
This is not a full review which I will leave to others partly because I have not read the whole document myself. I do want to comment on a few issues raised in the recommendations that have particular relevance to my profession of chaplaincy.
The Inclusion of Spiritual Care and Chaplaincy
Dame Cicely Saunders long ago proposed that what we now call palliative care deal fully with four domains- physical, emotional, social and spiritual- and that all four be equal in importance. Nevertheless, all too often in modern palliative care the spiritual dimension of care is not given equal billing or is even absent. That is clearly not true in this document where the spiritual dimension and chaplains as the leaders in providing spiritual care are clearly and repeatedly acknowledged. While it would have been nice and proper to have a chaplain on this panel, it is remarkable that we have reached a day where there doesn’t need to be a chaplain at the table in order for the spiritual domain and chaplaincy to be fully included.
While the panelists and reviewers should receive a lot of credit for this inclusion, it is important to note that they could only include published evidence. None of this could be their own opinion or experience. The evidence could be research, regulation (e.g. Joint Commission or professional association standards), or guidelines (e.g. National Consensus Project). The evidence had to be there and the panelists and editors had to judge that it was of high enough quality to include. Kudos to all of those who have contributed to the effort to develop this evidence in and out of chaplaincy. This shows that the effort is worth it and needs to continue.
The report includes five extensively described recommendations. There are parts of the recommendations that chaplains are already strong in and some where we can make significant improvement.
Not surprisingly the report finds issues with the quality of conversations between providers, patients and family care givers and lack of training to hold those conversations. This is a place where chaplains are strong but we could do more to be leaders on our teams and teach our skills to others. We also have the recommended established competencies for palliative care chaplaincy but our professional associations have not done nearly all that they could to promote them and make them the standard that this report calls for. The report points out how most training is discipline specific and fails to include specific training in palliative care. Chaplaincy is guilty on both counts. If we expect professional chaplains to be the spiritual care leaders on palliative care teams, we need to train them for that role which we currently do not.
Finally, the report recommends the promotion of public discussion of the issues around palliative care. Chaplains, with our often close connection to the faith communities, are ideally positioned to encourage these discussions. While some of us do this occasionally, we don’t leverage our relationships to religious and spiritual communities nearly to the extent we could to promote this conversation so that individuals and families come to some understanding and clarity about these issues before they are in a health crisis.
All in all, lots of good news here for spiritual care, but also some significant challenges for chaplains.