A|| Terin, I've asked Dottie Deremo, the President of Hospice of Michigan, to address your question. She responds:|
One of the key principles of hospice care is self-determined life closure. I highlight self-determination to emphasize that hospice is about helping individuals and their loved ones determine how they wish to live in the final stages of their life. Hospice assists the patient to live life to the fullest by relieving physical, emotional and spiritual suffering. This allows the patient and family to focus on what is important -- taking care of unfinished business in their personal lives, with relationships and estates. With this as the backdrop, let me answer your questions.
You asked "If the patient knew hospice was being called in, would they loose all sense of hope? How can you approach the use of hospice to your patients without them feeling like all hope is gone?"
It all depends on what one knows about a patient's awareness of their health status and their values and preferences. If, for example, a patient is approaching a point in his progressive chronic illness when he is experiencing an increase in the frequency of hospitalizations because of recurrent distress such as pain or shortness of breath, and he fears that something "bad" may suddenly happen to him and he'll end up plugged into machines in an ICU, and he is concerned about being a burden to his family, a hospice conversation may be appropriate and even welcomed. A person who prides herself on aggressively "fighting the good fight" to the end may or may not be appropriate for hospice. The two require very different approaches. This may sound heretical, but the goal is not really a hospice admission; the goal is to find a way to have the patient's and caregivers' future needs anticipated and met. Focusing on those things first may naturally lead both individuals to hospice.
We obviously can't change the course of their disease, but the referring party and hospice together can help the person with fatal illness revise what they can hope for, not take hope away. And if the person chooses to cling to the hope for reversal of his disease, as some of our patients do, it would be inhumane to remove that hope. I find that what people hope for and what they are willing to accept may be very different, and can exist simultaneously. Hoping for a miracle, or reversal of a chronic disease does not mean they are ineligble for hospice. Nor is there a requirement that people must be suffering to be admitted. Some of our patients never have pain. They simply want an experienced team of health care providers to coach them through their final days, much like Lamaze staff assist new mothers and infants. A patient once said " I just want someone beside me who's been through this a couple hundred times." Wouldn't we all?
How hospice as a service is framed to the patient and their loved ones by their physician, nurse, or discharge planner is also important. Unfortuately, hospice is often only associated with death, not living live to its fullest as I have come to know it. A "nothing more can be done" message to the patient prior to the well-intentioned hospice referral may have catastrophic results. It is grossly inaccurate for one thing. There are generally many things still to be done, so many in fact that a team of specialists (physicians, nurses, social workers, spiritual care counselors, on-call staff, home health aides, bereavement counselors and trained volunteers) are available to help the patient and the family. Another consequence of such a message of course is that people fear that they will be abandonned by their doctor, which is so contrary to good hospice care. We want the doctors that are meaningful to the patient to stay involved. They are the therapeutic intervention; they can facilitate healing when cure is not possible. How the patient's physician frames hospice care is critical. "Now is the time for special things to be done," is honest, not facile, and conveys quite a different message than the one above.
Most hospice insurance benefits are based on the Medicare Hospice Benefit, in which the patient is entitled to hospice services if their disease is life-limiting with the probability that the patient has a six month prognosis or less to live presuming the disease runs its normal course. It can be explained to patients that it is impossible to predict how their particular disease course will proceed. As a nurse, I can tell you that I have seen patients that were expected to live several years die within days and patients that were expected to die within days live several years. Each person responds in their own unique way. There are many immeasureable factors that affect life expectancy.
Some hospices have an open access policy and will accept patients who are struggling with cure versus comfort care decisions, as long as they meet the federal/state/private insurance guidelines for participation. These hospices
believe that it is their job to assist the patient and family through that complex transition process. Thus, it is not necessary for the patient to give up hope in order to be in a hospice program. This is especially important
to the parents of dying children. This territory is fraught with shades of gray Terin. It might be helpful to talk to your local hospice director about their own admission philosophy and practices.
You also asked: "Are there any initiatives to help educate those of us in healthcare as well as the consumer?
There are several national initiatives focused on education health care professionals and the consumer:
* The National Hospice and Palliative Care Organization (NHPCO) is developing a public engagement campaign to better educate consumers on these issues. NHPCO has had several press releases in the last few months and plan on an extensive campaign.
* The American Medical Association has funded the EPEC (Educating Physicians on End-of-Live Care) Program. This program trains key physicians to become the educators of their fellow physicians.
* The Robert Wood Johnson Foundation has funded an organization - Partnership in Caring - that is a consumer advocate group. The have developed an education arm, called Last Acts, who collects and distributes all of the current articles and research that is being published about end-of-life care.
* Most states have had some type of end-of-life commission which have
developed consumer awareness and health care provider initiatives.
* Many local hospices have a variety of educational efforts.
Most of the above mentioned organizations have websites that you can access for further information.
Even with all of this effort, it is clear that we have hardly made a dent in improving awareness of the value and services of hospice care. Many of us are working hard at changing the current lack of knowledge that exists. I hope this response has been helpful.
by True Ryndes on May 11, 2000