Tuesday, February 16, 2010
More, Better Hospice Care.
Registered nurses are trained to alleviate suffering through diagnosis and treatment of human responses to actual or potential illness. We are trained to assess and treat based on holistic goals and to view the patient in the context of their defined family. Palliative care and nursing philosophy share a holistic approach to care that encompasses physical, emotional and spiritual concerns of the patient and family unit. It is no small wonder that nurses have been the foundation of community hospice work since its beginnings. Physicians are trained to formulate and treat medical diagnoses. Nurse Practitioners are, well, the middle children. We are nurses who have advanced training in diagnosis and treatment of medical conditions in addition to our foundational training. Our medical training is not as deep or broad as that of physicians. Nurse practitioners often pursue further training to develop an area of expertise.
None of us truly knows what we don’t know. Even the most experienced hospice nurses don’t know how their practice would differ if they had the advanced education and training of a nurse practitioner. Few physicians or physician assistants understand the level of training of RNs or LVNs/LPNs, nor their scope of practice. How could they? They’re not nurses. Only the nurse practitioner holds the dual training and, as such, is the perfect liaison for optimal collaboration between these two disciplines.
Surprisingly, nurse practitioners do not play a pivotal role in most community hospice agencies. Medicare requires that there be a physician medical director. Registered nurses usually function as the hospice case manager for the care of the end stage illness.
Hospice nurses are well trained in using medications to manage symptoms. Hence the array of the (all too often) ‘one size fits all’ order set of PRNs. This makes sense when the nurse is out in the home or on the phone doing her/his very best to assess and treat distressing symptoms at the end of life. It’s pretty difficult to track down the doctor of record, contact her/him, describe the situation, request an order and get it to the patient within a reasonable period of time such that the patient (and family) does not suffer for hours longer. Having pre-signed orders to use PRN can be a life-saver (no pun intended) at times. The downfall is the one size fits all practice. Shortness of breath equals morphine; anxiety equals lorazepam; confusion/agitation equals haldol.
There is continued grumbling among hospices and palliative care folks that patients are often referred too late to hospice care. However, at least in the case of patients with some non-cancer diagnoses, are they? Is our system set up to care for these patients optimally at the end of life? Sadly, I think not.
Happily, there is a relatively easy solution – use nurse practitioners who have advanced training in palliative care and (my bias) gerontology.
What if hospice nurses had easy access to a palliative care NP who had the training to assess and treat medically complex patients at the end of life? What if the hospice nurses had access to someone who understood their practice and could provide the appropriate education and support to improve their practice? What if the NP was available for home visits? Hospice nurses might practice differently. Patients would get better care. And health care providers might not be so reticent to refer their patients a little earlier.
Case of Mercy Killing Hits British Media.
When Are You Dead?
But you can get an idea of the complexity of this research’s ethical implications from the reactions of students in two very different courses I happened to be teaching in a single day. In one class—of physicians discussing research ethics—a neurologist was very upset. She thought these research findings would be just as likely to make it even more difficult for her and families to decide what to do with those in a vegetative or near-vegetative state. The families might demand the new test, and then, if there is some intentional brain activity, they might be excited or even more frustrated and upset, depending on how they interpreted the results in their own consciousnesses.
As if confirming this, in my other course—this time a class of undergraduates exploring why we believe the things we do—we happened to be exploring the question of what constitutes a person. We had just read Descartes’ famous treatise (in which he proclaims “I think, therefore I am”) and the neuroscientist Antonio Damasio’s Descartes’ Error. Based on this new MRI research, we asked the question: If your Dad can only communicate through ‘thought MRI’ like patients in this study, would you consider him alive?
A student answered: I’d rather pull the plug, let him die. From personal experience, I’d rather just pull the plug. Tears formed in the student’s eyes, she broke down, and ran from the room.
Does religion help us here? Yes and no, as we heard in the (in)famous Terry [sic] Schiavo case. There are diverse responses to such cases even within particular religions, because the factual and conceptual lines are so blurry. A Catholic or a Jew might say: in Genesis we learn that we are all made in the image of God, we all have an inherent dignity, and to take that away is wrong.
But what constitutes dignity here? another Catholic or Jew (or my student who ran from the room) might ask. A Muslim might say: to kill one person is to kill all people, to help one is to help all—but another might ask: how are we defining life?
One Buddhist says, we must hold on and wait for a miracle—but another responds: we must let this person and her soul go peacefully or else we are negatively impacting its next life.
Once again, science sneaks in on (invades?) the way we live and die—and makes it easier, and harder, to do so.