End of Life Choices: Hospice Care – A Whispered Service
It is not easy to tell a patient that he/she has a condition for which there is no cure. Do we say, "There is no cure presently”? Do we say, "We do not have a cure, yet"? How do we tell this to a patient without feeling a sense of guilt – be it a collective guilt (thinking of the state of the medical profession) or a personal sensitivity (thinking of oneself and a sense of inadequacy)? When we inform a patient, do we try to avoid false hope? We may know that there is no cure on the horizon, whatsoever, so we may say, "Presently there is no cure.” Perhaps we are thinking that this makes it easier for us to say as opposed to what the patient might interpret -- that a cure might be just around the corner.
In today’s day and age, because there are so many scientific and medical breakthroughs occurring, and at such a fast pace, it is easy for someone to build false hopes. The point is, however, that we say it to the patient to be as honest and forthright as we would want our own clinician to be with us. Diagnosing a terminal illness may involve a patient who is ambulatory, lucid, and quite capable of self-management. On the other hand, the patient may not be ambulatory and/or elect to start "dropping out.” What if the patient just feels tired from fighting and chooses to "rest peacefully” or chooses to "end all pain?”
To this end, two important objectives we might want to think about when serving our terminally ill patients are giving them the opportunity to "settle their affairs” and giving them the greatest possible pain free physical comfort. Frequently enough, this may involve some time beyond one to a few days. Once a clinician informs a patient that he/she has a terminal illness and there is no hope, there are a number of scenarios that the clinician potentially faces: a sense of inadequacy, possible self directed anger, potential guilt, some degree of denial, a desire for isolation (including from family), and/or an inability to be communicative. The patient also faces a variety of feelings such as anger, self-pity, denial, despair, "dirty/unclean,” religiously abandoned, socially unacceptable, sense of negative worth, and/or a loss of control, to mention a few. Some may possibly even experience a feeling of salvation or relief. Either one, the patient or the clinician, may find it hard to face the other.
To say the least, dealing with death is quite difficult and unpredictable. But dealing with a disabling knee joint is difficult for the patient and difficult for the cardiologist. Dealing with a congested lung is difficult for the patient and difficult for the orthopedist. Dealing with a gastrointestinal parasitic infection is difficult for the patient and difficult for the neurologist. Dealing with obsessive compulsive disorder is difficult for the patient and difficult for the urologist. In each of these scenarios, both the patient and the clinician are facing a situation that they are not accustomed to dealing with in their respective, routine existence. In each scenario, the chances are that both patient and clinician would very well profit by calling in someone with expertise that would complement the scenario.
In a scenario in which death becomes the focal point, would it not make sense to call in the people with the dedicated expertise? These people are the hospice clinicians – clinicians trained in and dedicated to working with and caring for terminally ill patients. Their expertise, to put it bluntly, is "death.” They know how to render care for both physical and emotional pain. They have the necessary experience to offer help, including palliative care, to the patient, to the clinician, and/or to the survivor. They are conditioned to offer aide under these circumstances without the threat of personal scarring. They can engage in these scenarios with the sincere understanding and adaptive, sensitive behavior while at the same time protecting their own sense of self.
A problem is that their service or expertise is not as commonly known nor appreciated as it should be. In educating our clinicians, there often is to scant an exposure to the value and understanding of hospice care. The study of death (thanatology) in itself is sparse. In three classes of physician assistant students in succession (an average of 75 students per class) just about 6% of the students knew the name of Dr. Elisabeth Kübler-Ross. What was interesting was not just that the students did not know her, but also that they were not aware of the complexities involved in the issues of death with a patient, with a clinician, with a survivor, issues that Dr. Ross opened the door to.
This is somewhat understandable because in our society, we frequently tend to avoid discussing, associating, or understanding death, and as such, terminal illness often becomes a contagious, "hands off” concern.
Wouldn’t it be more beneficial if hospice care became a louder voice and not a "whispered service”?
Grosz R. End of Life Choices: Hospice Care – A Whispered Service. The Internet Journal of Allied Health Sciences and Practice. 2013 Jul 01;11(3), Article 1.