Author:Raul Zimmerman, MD
Jim is 78 years old and has been fighting Parkinson’s for decades. He was able to remain active for years and on two occasions, when his symptoms became significantly worse, he responded well to new medications that became available. The last years, however, have not gone well for Jim. Even with the latest medications, his symptoms are poorly controlled. He has increasing difficulty walking and the paramedics have had to come to his home several times after falls – sometimes to take him to the emergency room to check for injuries; sometimes just to help his wife get him up off the floor. Over the last 6 months he has had difficulty swallowing his food. When food goes “down the wrong pipe” – an aspiration – he develops pneumonia and needs to be hospitalized. He understands that the disease will grow worse over time. He does not want feeding tubes and artificial nutrition. He does not want to keep coming back to the hospital – he wants more time at home with family. He wants his wife to have help.
This issue of Orlando Medical News has a clinical focus on neurology. This specialty is such an exciting area of medicine. There is rapid development of new diagnostic and therapeutic tools. And, as we gain a better understanding of our nervous system in health and disease, it truly feels like we are opening up and developing a new frontier.
While we search valiantly for cures, treatments, and means to prevent challenging neurological diseases, we must continue to provide compassionate and dignified care to those who suffer from these problems and who will likely die from them. These are people like Jim, above, with Parkinson’s disease, and those with other neurological conditions for which we currently have no cure. For people facing advanced neurological illness, hospice can play an important role in providing needed care.
There are many myths about hospice care, and the misunderstanding caused by these myths often results in people not receiving the wonderful care that would benefit themselves and their family members. One myth is that hospice is only for patients with cancer. Although the hospice movement in many communities grew out of local cancer programs, about 2/3 of hospice admissions nationally are now for “non-cancer” diagnoses. These “non-cancer” diagnoses include many diseases and injuries to the nervous system including stroke, Parkinson’s disease, dementia, traumatic brain injury, amyotrophic lateral sclerosis (Lou Gehrig’s Disease), multiple sclerosis, and others. Many of these can cause situations very similar to Jim’s.
Another myth is that hospice care is only for the last days of life. In actuality, the hospice benefit was set up to serve patients and families for the last 6 months of life. And, because predicting life expectancy is an inexact science, the benefit also allows the care to be extended if predictions turn out to be wrong.
A third myth is that hospice care means a patient has to be moved from his/her “home.” On the contrary, hospice works to provide care and support wherever the patient normally resides. Sometimes that’s a private residence, sometimes it’s an assisted living facility or a nursing home. Most patients want to remain in the place they currently consider their home, and hospice can help make that happen.
A fourth myth is that hospice means “giving up.” A transition to hospice care is more of a change of focus. Rather than doing everything to prolong life regardless of the patient’s comfort, hospice strives to optimize quality of life, comfort, and time at home with family/loved ones for whatever amount of time remains. Hospice care neither hastens death nor prolongs life. For many patients, particularly those with recurrent hospitalizations and uncomfortable treatments, this change of focus is welcome. Family members and caregivers appreciate the extra layer of support provided by hospice staff (nurses, nursing assistants, social workers, chaplains, volunteers, etc.) and the ability to get help 24 hours/day without having to call the paramedics.
A fifth myth is that a decision to enroll with hospice is somehow “chiseled in stone” and can’t be reversed. This is far from the truth. If a patient enrolls with hospice and for any reason decides that they no longer want hospice care, dis-enrolling is easy and quick. And, should the situation change and they decide at a later time to try it again, re-enrolling is simple. In essence, there is little to lose in accepting hospice services. If the physician feels that life expectancy is 6 months or less, and the patient (or the patient’s legal decision-maker) feels that a comfort-oriented approach is best, a trial of hospice enrollment makes great sense.
A sixth myth is that hospice care is expensive. Medicare, Medicaid, and many private insurers cover the cost of hospice care usually with no out-of-pocket expense to the patient or family. This care includes among other benefits: visits from hospice staff members, needed medical equipment at home (including a hospital bed, oxygen, etc), and medications for comfort.
Although the above myths often interfere with the timely enrollment of patients in hospice care, there are other important factors. Probably the biggest factor delaying enrollment is that it’s never easy to talk about “end of life.” It’s not easy for patients, for family members, or even for doctors. But if we don’t talk about it, we can lose the opportunity to make that time of life comfortable and meaningful. Many of us fear that by bringing up “hospice,” or “end of life,” that somehow we will hasten death or cause the patient to lose hope. In reality, in most cases where there is advanced illness and no definitive cure, the patient, family members, and doctors have all been thinking and worrying about “where is this heading, what will it look like, and how will I manage?” Bringing these concerns out in the open and having sensitive and heartfelt discussions is usually a relief to all involved. Through these discussions, patients can state their goals and wishes for care going forward and caregivers can plan for the additional support they need.
As we explore new frontiers in diagnosing and managing neurological conditions, let’s make sure we provide the best care possible to those suffering from the advanced stages of these diseases. Let’s make sure that people like Jim can have their goals honored. Let’s provide the professional services/medication/equipment they need to remain at home. Let’s make sure that symptoms are managed as well as possible. Let’s provide support for the spouses and other caregivers. Let’s get them enrolled with hospice in a timely fashion.
Raul Zimmerman, MD, is the first full-time medical director for Halifax Health – Hospice and his entire clinical practice is now devoted to end of life care. He is Board Certified in both Family Medicine and the new specialty of Hospice & Palliative Medicine. Visit Halifax Health at halifaxhealth.org