My recent post on end-of-life care issues, "What if they had had to pay?," generated a lot of comments in the blogosphere and beyond. One intensive care doctor sent me a particularly poignant note. It gives a good sense of what it is like on this person's side of the bed. The note re-emphasizes the need for better end-of-life planning, for the sake of patients, families, and providers.
Here's my day so far. This is my first day of a 7-day stretch in a tertiary ICU. The average census in this ICU is 10, but today we have had to surge to 15.
Let me stop right there. This is doctor (and nurse) shorthand for, "I expect to be very busy, very tired, and very stressed out. I am going to have to make some highly critical clinical judgments, sometimes with very little time to react. I don't know anything about these patients beyond what is in the charts and what our care team sees and hears for themselves."
Two patients today coded in our hospital. One family wants "everything" done, and seemed shocked to learn that I don't think it is right to provide "everything." The other family wished someone from the healthcare team had bothered to ask them what their 89 year old dad would really like to accomplish from his hospital stay before he tried to die. We decided to let him finish dying.
And I had 3 other similar discussions with patients or their families about goals that can actually be achieved. All of them were already in the ICU, having had no real clear previous discussions. One of those patients was admitted last night, but the other 2 had been in our ICU for days....
11 comments:
IMO, this is just more evidence that doctors have largely given up medicine. We are now just super- technicians. The trend toward hospitalists has vastly exacerbated this tendency.
nonlocal MD
Really? I don't take that at all from this story. This is a very caring and involved doctor.
I also disagree about hospitalists, whom I have found to be "old-style doctors" more than almost any other specialist group. When primary care doctors used to "take care of" hospitalized patients, they would show up at 5am and 8pm for just a few minutes and miss most of the day's activities and events. Hospitalists, in contrast, really get to know patients and family members. They are also at the vanguard of process improvement on the floors of hospitals.
From Facebook:
This is a conversation that everyone needs to have with their loved ones. Even when you think their decision is crystal clear and in writing, there are circumstances that arise which can render one totally helpless. Be explicit, talk about the hard stuff, reason with the "everything" group and let the patient have the ultimate say as to a dignified death. No room for gray.
Paul;
No, I meant that this doctor is a contrast to those who failed to have this conversation with their patients BEFORE they arrived in the ICU. I may be wrong, but I think that was his/her implication also.
My experience with hospitalists was diametrically opposite to yours with my elderly relatives' hospitalizations. Not only did they not know the patients, but there was a different one every shift who, rather than consulting the chart, kept asking the patient to reiterate the history, etc. They spent no more time with my relatives than did the primary care docs in the old days.
You probably had unusual hospitalists at your place, perhaps due to it being an AMC. The ones in community hospitals may be a different breed. I most certainly never had one that took time to get to know the patient/family.
nonlocal
I can just picture the scenario. Terminally ill patient arrives at the hospital, often at night, no longer able to communicate. Family member(s) are summoned to the hospital. They don’t know what their loved one wants because the subject was never discussed and there is no living will or advance directive. Even if there is one, nobody knows where to find it. Middle age children who haven’t yet come to grips with their own mortality have trouble deciding what to do or don’t want the responsibility. If they must assume the responsibility, the path of least resistance is to ask the doctors to “do everything” especially since someone else (usually taxpayers) will pay for the care. It would have been such a gift to family members if these patients had provided some guidance ahead of time, at least orally and preferably in writing. Why should society have to pay for care that many of these patients don’t even want but can no longer say so? In my opinion, lack of end of life care planning is not only financially wasteful, it’s unethical. People, especially the elderly, should step up and address this issue while they still can. It’s not that hard.
This scenario was so common when I rotated through the ICU in 1987, 1988, 1989, 1990...Seems like it still is. So that's ~25 years, x how many ICUs in the U.S, x how many patients dying there each day who didn't/wouldn't have wanted to? So many resources and $$ wasted, lots of physical and emotional harm, almost all of which might have been spared by honest discussion.
This doctor is exercising what we should all be doing: “de-deification” of doctors. We do not tell patients and relatives our limitations (those of the art and ours). Many docs operate under the Hippocratic dictum “I know your disease and I know how to treat it” when this is not true.
From Twitter:
You're so right! It's so hard to get pts families to understand.
It's hard enough to be sick and possibly dying, but even worse to watch the distress of the family going through it. If the patient wishes to continue life - that's his/her choice. Until the day when the medical profession presents definitive requirements for folks to follow for end of life decisions, it will remain the patient's choice. Thank goodness.
Who cares how tired and overworked staff is? Administrators and staff need to find a better way to staff units so that they are ready & able to care for the patient, no matter what their condition. Sick of the bellyaching about who lives & who dies. Its just not anyone else's choice - especially not the government's or the insurance company's. Euthanasia & death panels take a hike.
As a board certified chaplain who has numerous years of experience working in ICUs and situations just like this, I would advocate for the role of the chaplain. Professional chaplains, as members of the multidisciplinary team, don't impose a particular religious tradition. Rather, we are trained to talk with patients and families about their beliefs and values and then assist in incorporating them into the plan of care. We also provide education about advance directives and assist persons in completing them as well as faciliate discussions with family members in understanding them. When there is no advance directive and the patient can no longer speak for themselves, we engage families in conversation about the patient and the things that were important to them. Chaplains work side by side with physicians, nurses, and other clinical staff and also provide education for them in how to have conversations about cultural, religious, and spiritual values and well as negotiate family conflict. In this way we can also support them in difficult situations. Physicians, advocate for your organization to employ a board certified chaplain. Patients and families, know that the professional chaplain is there to walk with you in the most difficult and stressful times in healthcare.
Great post. And yes, Sue, I agree.
I wish I worked in a hospital where there was more emphasis on team (especially chaplains) in situations like this. In my area, it is less common, but when you need someone to discuss stuff like this, trained staff who can help can make a difference.
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