Palliative Doctors Question Accuracy of Palliative Care Media Coverage.

I've been adamant about my enthusiasm regarding the New York Times recent Months to Live series basically because the subject of end of life care sees so little attention from mainstream media. The recent article on questioning the Dartmouth study was a bummer because it failed to address the primary issues of end of life care and chose to work with the sensationalization and questioning of studies. But I thought the palliative sedation article by Anemona Hartocollis was a great example of a journalist getting access to end of life situations, patients, doctors, and family members.

PalliMed, one stellar blog that you should be reading, has a run-down of the palliative article that gives us an insider's take on the reporting that Hartocollis did. And the analysis hits exactly the challenges of reporting on such taboo subjects, on gaining access for such reporting, and on how difficult it is for reporters to get technical and emotional reporting right.

I take this all as a great reminder, as a journalist working on a project about end of life care, that nuance is a difficult thing to capture and that while grabbing and keeping readers is important, paramount is the service of education and dispelling sensationalism.

PalliMed's Drew Rosielle writes:

This Sunday's New YorkTimes had a front page/below the fold article on 'palliative sedation' (which as of last night was still the #1 most emailed article according to their website). It is a long, confusing article, & I'm still trying to figure out what I think of it. Like most newspaper articles about things like this it gets some things it gets spot on, while others I found deeply troubling.

And lists the issues he has with the article:

Aspects which troubled me:

• There is no mention of the (yes incredibly preliminary and by no means rigorous) investigations into PS practices which do not suggest it frequently hastens death (see for instance here: I by no means think this is any sort of definitive evidence, but it's an indication that people are beginning to try to answer these questions and thus far are not coming up with much to suggest current sedating practices hasten death).
• The article associates PS with rationing care at the end of life (ie clinicians being urged to hasten things along with PS to save money etc.). It does this by essentially saying 'boy PS could be used this way' then notes that no one thinks it is - but this is a sort of journalistic guilt by association (bringing it up then shooting it down) even if there is no one anywhere who thinks this is a significant problem.
• Every time it mentions sodium thiopental it notes it is also used as part of a lethal injection cocktail. Nice. So is potassium chloride, one of the most widely prescribed and used meds out there, but who's counting.
  
• One of the photos is of a patient who is described as resisting a DNR order for sometime, who at some point prior to her death agrees to it. They have a photo of her signing her DNR order - in the photo her doctor is actually holding the patient's hand with the pen in it (as if to steady it, etc.) - but given the overall tone of the article the (usually slumbering) paranoid part of me wondered if that image was deliberately chosen to suggest the patient was pressured into signing it against her better judgment, etc.
• There is no presentation of any patients for whom sedation (whether CDS or not) is seen as a good, welcomed thing (by either the patient or family). For every patient discussed in the article their sedation was presented as emotionally fraught, troubling to either the patient, or the family, or even the clinicians. As I mention above, this is absolutely fair, but in my experience it's just as common for family members to greet the mention of deliberate sedation with relief and gratitude: 'thank you for not letting my love one die suffering like they have been,' etc. I scanned some of the comments online and many of them spoke positively about sedation (either 'I'm glad the doctors did it so my loved one didn't die in pain' or 'When I'm dying I hope someone is willing to make me comfortable even if it means this') - it's too bad the article didn't present this perspective.

The National Hospice and Palliative Care Organization (NHPCO) also takes on the article (mentioned in PalliMed's comments), discussing the mixed feelings palliative and hospice practitioners have about such reporting. They are pleased that dialogue is being started; they worry that the direction the dialogue takes may not be wholly accurate because of lack of knowledge, disclusion of information, or misleading opinions of journalists:

Whenever the media focuses on issues involving end-of-life care, there are sure to be different points of view, nowhere is this better understood than within the hospice and palliative care provider community. When such an article appears in the press, there is always value in the conversations that follow among individuals and families, and between healthcare providers.

That said, there is concern regarding The New York Times article by Anemona Hartcollis, “Hard Choices for a Comfortable Death: Sedation”(12/26/09). While the large majority of the nearly 500 responses posted to the New York Times Web site in response to this article reflect favorably on hospice care and the personal experiences of many readers, there is concern that others may draw inaccurate conclusions about hospice and care of the dying.

As Ms. Hartcollis points out, intractable pain at the end of life is never a simple issue. A decision to use sedation near the end of life should be made carefully and thoughtfully, with adequate support from knowledgeable and skilled healthcare providers.

Research showing that patients at the very end of life who receive palliative sedation do not die more quickly than patients who are not sedated has been published in such peer reviewed professional journals as Annals of Oncology, Journal of Palliative Medicine, Journal of Pain and Symptom Management, Archives of Internal Medicine, and Palliative Medicine. (A bibliography of these articles is available from NHPCO.)

And they clarify a few issues from the article:

Hospice typically involves a wide range of interventions to control physical suffering in addition to meeting the emotional, spiritual, and social needs of the patient and family. Provided by an interdisciplinary team of professionals, hospice services can include counseling, complementary therapy (such as massage, music, and physical therapy), and medications. In the vast majority of cases, a combination of medical and non-medical therapies can reduce physical suffering to a level that is comfortable for the patient.

On the rare occasion when treatments for pain or other forms of physical suffering are not able to help the patient reach an acceptable level of comfort, hospice providers may discuss the option of palliative sedation. The benefits and risks should be discussed carefully with the patient and his or her family. The patient and family are always at the heart of all decisions that are made and every patient’s care plan is individualized and unique to him or her.

NHPCO—in alignment with the world's leading experts on palliative sedation—believes that palliative sedation should be used only when other therapies that do not compromise patient consciousness have failed.

Above all, any discussion about sedation should begin early. Rushed decisions by patients and families in crisis are often not ideal. Instead, patients are best able to make decisions when they have time to discuss and reflect. Advance care planning and good hospice care should therefore pay attention to patients' goals and fears about suffering, and should anticipate the need for sedation so that decisions can be made with the care that they require.

The NY Times article makes reference to the term “slow euthanasia.” Palliative sedation is medically, ethically, and legally separate from euthanasia. It is not administered with the intent to cause death; it is not administered with the foreseen outcome of causing death; and, when administered successfully, it does not cause death.

The National Hospice and Palliative Care Organization along with the American Medical Association, the American Association of Hospice and Palliative Medicine, and the United States Supreme Court believes that palliative sedation can be a safe and appropriate intervention at the end of life. Importantly, NHPCO does not believe—nor do any of the aforementioned institutions—that palliative sedation, when practiced safely by qualified clinicians using evidence-based protocols, is a form of “slow euthanasia” or euthanasia of any kind.