Hospice After Kevorkian: Still Lessons to be Learned

Thank you, Dr. Salwitz, for bringing this post to the forefront again. However, I’ve reread it and continue to, respectfully, disagree with it from both sides you mention. Just as your patient misunderstood hospice as a death sentence, you misrepresent hospice when you say it is “only about life.” Let me explain. Hospice is not direct euthanasia, but it has happened. Hospice is not assisted suicide either by drugs or withholding food & water, but it has happened. Hospice is not a final trip to Disneyland or a non-stop “party till you go,” but it has happened. This is what hospice is: 1. Hospice is recognizing that your death is unavoidable and may occur in six months or less from one or more of a number of medical conditions accepted as terminal. 2. Hospice is recognizing that your curative care options are either futile or unwanted or both. 3. Hospice is your right of autonomy (control) over your own body to have your death arrive in the most dignified and pain-free manner possible by comfort care (palliative care) alone. Therefore, hospice has two focuses: 1. To support the dying person in achieving the most dignified death possible. 2. To help the dying person achieve a level of comfort acceptable to that person in support of that dignified death. Hospice, if done well, may have additional benefits (assuming the patient has some level of strength, mobility and/or communicability…i.e., can speak): 1. Patients may be able to think more clearly (less pain fog) in order to concentrate on and conclude certain desires (complete projects, a final trip, etc.) 2. Patients may be able to reconcile past hurts or have meaningful goodbyes (but only if they want to…not all people want to make up with “crazy Uncle Larry”). What hospice “Is” and its focuses (above) are neither palatable nor highly-marketable to our death denying society. On the other hand, “additional benefits” of hospice (if done well) are both palatable and highly-marketable. To say “hospice is only about life” (therefore, the “additional benefits only”) is the height of denial of not only hospice but also the discussion about death. How can we exclude death from “what hospice is” when someone must be dying for hospice to be used? It insults those actually in the process of dying as it excludes them. They are the ones running out of life the fastest. You only need to ask any patient…just as did Cicely Saunders, Florence Wald and Elisabeth Kübler-Ross, the ones attributed with the founding of the modern hospice movement. The statement “hospice is only about life” is purely, unequivocally “marketing” and nothing more. It panders to those who will outlive the patient and, ultimately, be the ones to bring in more business. It makes them “feel better” about their loss. Hospice, whether we like it or not, is no longer as it once was; purely non-profit, existing only on donations and the time of volunteers (nurses, doctors or caring public). That pure altruism has been replaced. When Medicare found in the early 1980’s that hospice could save money, things changed. Hospices became, as they are now, businesses, regardless of tax status. Very, very few do not bill Medicare, State Medicaid or insurance companies. They all have competition they didn’t have before. They must follow strict rules for billing but loose, rarely enforced rules for patient protection. Just as with any service from any company, we should all ask questions of any hospice we are considering. Of course, this would require us to be proactive regarding death and dying which, unfortunately, we are not very good at. I’m sure you’ve heard this before that we research more about which car or TV to buy than (I’ll let you fill in the blank). It is much worse for hospice. Hospices are perceived to be good simply because they contain the word hospice in their name. If hospice is to truly be what it claims, then each and every hospice agency must be willing to answer the questions they won’t put on brochures, provide the public with tools to discern quality between hospices and not play word games (with the dying) such as “hospice is not a place but a philosophy of care” when in actuality it CAN be a place IF the hospice has its own freestanding hospice inpatient facility. They must standardize their practices as much as possible to assure quality of care across the entire hospice industry. They must avoid taking advantage of loopholes or laxness in Medicare’s billing regulations that allow each hospice to define its own set of rules when those rules are likely to be detrimental to the patient. For instance, Medicare allows a patient to be “discharged for cause” but allows each hospice to individually create a policy on what “cause” is a discharge-able offense. And worse, these policies don’t even have to be in writing. Keep in mind that hospice, as a business, is neither good nor bad. It can only be profitable or unprofitable. People are the only thing (management and/or staff) that make any business good or bad. So, how is the public supposed to choose one hospice from another? Reputation? Are the same people who built that reputation still working at, in charge of or the owners of that hospice? Trust? These are total strangers to you. Policies? Many won’t let you see them (internal use only) or don’t have them in writing. How easy then would it be to simply say “you violated our policy.” Other policies are not disclosed until needed. And, as is increasingly occurring whether in writing or not, is the inclusion in the Hospice Patient Bill of Rights of the following (or similar) verbiage: “Should you refuse to comply with the plan of care and your refusal threatens to compromise the hospice’s commitment to quality care, then the hospice or your attending physician may be forced to discharge you from the hospice and refer you to another source of care.” What if the hospice refused to allow you to be involved in developing the plan of care, refused to give you a copy of the plan of care or even see the plan of care? Under what circumstances would your own physician be likely to agree with your discharge when he/she retained you as a patient long enough for you to choose them as your attending physician? Hospice is, first and foremost, compassionate care of the dying. There is no place in any hospice for deceit, greed (including billing fraud), or abuse of patients in any form from the inappropriate solicitation of donations to the withholding of needed care to coerce a patient’s compliance or to save a few bucks. Hospice is about you and a dignified death while retaining as much quality of life as possible from the time you enroll to the time you die. Anything less is not hospice.