Sunday, February 28, 2010
The Philadelphia Inquirer enters our national end-of-life conversation this weekend with a tour-de-force that accurately portrays the reality of life and death in the American healthcare system as well as the potential of palliative care. The article describes the experiences of Mary Tole, a 74 year-old woman who spent 67 days in the hospital at Abington Memorial Hospital last fall (10 in the ICU and 57 on a ward). The palliative care team's crucial interactions with the patient and her family are detailed.
Mrs. Tole was admitted originally with delirium and falls. She had been previously healthy. After an extensive workup, no cause could be found and her condition worsened. Six weeks after admission, a palliative care consult was obtained and FINALLY someone (Dr. Diane Dietzen, Palliative Care Medical Director and team) sits down with the patient's family to review her situation. The patient's brothers are nervous before the meeting. Is this finally the "death panel"? Is the hospital going to make them pull the plug?
But if you're in this field, you know what ensues: as a result of the family meeting, the family becomes better informed, has a chance to "vent", and seems to feel well supported. They even wonder, well, why didn't we receive this opportunity earlier?
The article heavily quotes Dr. Sean Morrison, guru from CAPC and the National Palliative Care Research Center.
But the best part?
The patient is still alive today, and achieved her goal of returning home. The palliative care team remained involved in her care as she slowly improved and until the time of discharge from the hospital. While certainly a significant proportion of palliative care patients die within a short time after PC becomes involved, it remains vitally important to reassure people that this is not because of palliative care and that PC practitioners are very interested in supporting patient autonomy when it's feasible (or supporting substituted judgment when patients aren't able to tell us what they want).
The fiscal side of the patient's care was also detailed:
- Total hospital charges were $775,636.70 ($95,092.71 reimbursed by Medicare Advantage Plan)
- Medication charges alone were more than $180,000
- Physicians billed for about $60,000 in fees ($10,900 reimbursed)
- Reimbursement for the palliative care services? $854.90 (13 visits)
After all of this, Mrs. Tole has finally completed an advance directive which states her wish to be DNR and names her daughter as her surrogate.
In a much more melodramatic manner, Keith Olbermann recently delivered a diatribe about his father's illness (laced with angry reprimands for those who might wish to derail health care reform). His father has been hospitalized for several months and has a chronic critical illness. You can watch the video, but in essence, Olbermann describes his father pleading for help and then subsequently asking for Olbermann to kill him because of the amount of suffering he is going through (trach, PEG, chest tubes, dialysis, etc, etc). Olbermann approaches the surgery resident to ask if they can sedate his father, and the resident complies. At the time of recording, he was no longer sedated but comatose and septic.
Olbermann goes on to talk about how lucky he was to be able to have significant conversations about his father's wishes beforehand. He has some choice words for those who don't want to reimburse physician-patient end-of-life conversations (ie the provision to reimburse ONE advance care planning conversation every FIVE years).
I thank Olbermann for his poignant description of his father's struggles, his enthusiasm for advance care planning, and I wish his father and family the "relief and/or release" that his father rightfully demands. But is advance care planning really the issue here? ACP often has a limited impact on what actually happens once someone becomes ill. Olbermann seems to suggest that he had those tough talks with his father before his current illness, and it sounds like his father still retained at least some capacity to make decisions up until very recently anyway. Yet his father still wound up having interminable suffering.
I look at advance care planning as sorta like an immunization. If you give 100,000 people the flu shot, some will be protected from having any symptoms of the flu, many will still get mild symptoms, and some will still have a severe case of the flu inspite of the shot. What does advance care planning immunize people against? Hopefully, unwanted intervention in the face of a poor prognosis, for one. But more importantly, it probably immunizes loved ones against "second guessing" or "thirtieth guessing" (as Olbermann puts it). It's not going to stop the second guessing altogether, though. Second guessing is part of any difficult decision, especially important decisions that you rarely make. ACP seems most helpful to me in those circumstances when the patient's poor prognosis is REALLY clear (either they are very likely to die soon regardless of what is done or they aren't likely to recover some important function, like severe anoxic brain injury). Patients who have completed living wills usually have those types of circumstances in mind when they completed the documents. But oh, the paths that you can take to reach your death and how often the prognosis (and even diagnosis) remains unclear up until death or resolution of the illness! (As in Mrs. Tole's case.) ACP seems much less helpful in those circumstances, and leaves more room for "thirtieth guessing."
So here's the "care pathway" that needs to change:
1) Man gets really sick, goes through torturing procedure after procedure.
2) Man gets to the point where he can't take it anymore.
3) Man pleads with his son (presumably before his doctors?) to RELIEVE and RELEASE!
4) His son thinks the man's docs will look askance on this request (indicating that the doctors have never had a goals of care conversation with the son previously).
5) Only at that point does any communication seem to occur about relief of suffering and the possibility that life-prolongation should no longer be the goal.
In other words, just as when someone requires intensive care for the flu in spite of an immunization, when the living will or previous discussions don't necessarily apply to the present serious illness (or ACP hasn't taken place), you need someone who can provide intensive communication care: someone who can get to the bottom of how the illness fits into the patient's life-narrative and someone that can blend this narrative with the medical narrative in a way that makes sense to the patient's family.
As discussed previously on Pallimed, the current Medicare reimbursement scheme DOES reimburse physicians to have these difficult conversations. You can bill for time spent counseling, and there's no limit to the number of these sessions. Why don't they happen?
1) Inadequate training of most physicians to conduct these types of conversations.
2) Disproportionate reimbursement for procedures compared to "cognitive-based" tasks.
3) Inadequate availability and utilization of palliative care teams.
As Mrs. Tole's case suggests, our country would have nothing to lose if healthcare reform (in whatever form it takes) ameliorates all of the above concerns.