Caregiving is a complicated process. And no area of it is more complex than the subject of quality of life choices and advance directives, those documents that patients can use to determine who is going to make decisions about their care when they no longer can, and just what those decision can—and cannot—be.
Last week I was privileged to be part of a conference for caregivers hosted by the Cancer Center at Hoag Memorial Hospital, Presbyterian in Newport Beach, CA. In a terrific program offered through the hospital’s Palliative Care Services, I found out there’s some new material to share with caregivers on the subject of advance directives and what I’d call care management.
At this particular hospital, Palliative Care extends far beyond the limits of keeping dying patients comfortable. It has become what I consider care management. All patients– every single person who checks into the hospital for in-patient care– are offered these services. What that means is that the medical team who are treating the patient, the patient’s caregiver and other family members and the Palliative Care team meet to talk about the full spectrum of the patient’s needs. One of the services the team provides is to help the patient and medical team, along with the caregivers, put together a care plan.
For instance, if the caregiver is unable to drive and the medical team expects the patient to receive out-patient treatment, then part of the plan is to find community resources—or other caregivers—who can get the patient to the treatments. As I say, another name for this would be care management. Does your loved one’s medical team offer something like this? If you’re struggling to overcome gaps in the care your loved one needs, start asking questions as to what’s available and be sure to make it clear that when you talk about palliative care, you’re talking about care management, not just pain management.
The new wrinkle in advance directives, in California and a handful of other states, is something called a POLST (Physician Orders for Life-Sustaining Treatment). It’s meant to make the issue of emergency treatment less murky. Some patients have a DNR (Do Not Resuscitate) order, but if they have a medical crisis and are rushed to the emergency room, unless that order is pinned to their clothes, it may not be honored because the emergency medical people won’t know it exists. Even when the order has been entered into the hospital’s data base, you can’t be sure it will be found during an emergency admittance, or that the patient’s emergency will land them in the hospital where the DNR is on file. And sometimes even with the DNR in hand, it won’t be honored because it’s not in a form that conforms with the hospital’s needs.
A POLST is a doctor’s order, like a prescription for drugs, so it cannot be denied in the states where use of a POLST is approved. It should be carried with the patients always, so that no medical treatment is administered that they don’t want. The criteria for using one is very limited. It’s for patients who’ve been given a terminal diagnosis, and it must be signed by the patient’s physician and the patient. It’s not a bad idea to have several copies—for the caregiver, alternate caregivers and the physician—to be sure that it can’t be ignored. That would be difficult to do. The one I saw was hot pink.
For more information, see http://www.polst.org.
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