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ALS and HospiceLiving with an illness that strongly impacts one's ability to function independently can challenge the strongest among us. Providing care for a person living with ALS can be a daunting experience, especially in a world in which most of us also work outside of the home. As a social worker, working with families living with ALS, I have learned that success stories often reflect the family's willingness to accept care and support from outsiders. This can come from an informal network of caring friends and neighbors or in the form of a paid helper who relieves the family caregiver for a few hours, or lives-in to provide round-the-clock care. Another important source of assistance in caregiving is hospice. I am aware that many of us respond to this word with fear, defaulting to our association of the word "hospice" with the phrase "less than 6 months of life to live". This is not a true picture of what hospice can be for those living with ALS. Here is the picture of hospice from my perspective as a hospice social worker. First of all, let's review what the hospice program is and is not. A diagnosis of ALS entitles a patient, who is then considered "disabled" according to Federal standards, with access to health care under the Medicare program. Hospice is a benefit program of Medicare, and is supported by many private insurance companies as well. Hospice is free to those who qualify and provides a myriad of important support services for both patients and family members living with ALS. So how does one qualify? Hospice is a program that is available to people who no longer have "treatment options", such as surgery or chemotherapy to halt their disease process. Initially used for the most part by patients with cancer, hospice qualification is where the words "less than six month to live" originated. Physicians recommending patients to hospice are asked to use a set of specific markers within each disease group to attempt to document that patients have a limited remaining lifespan. The good news with ALS is that because this disease is so individualistic in its presentation, the government's devised markers often apply initially to a particular ALS patient, but the timeframe of the diseases progression does not. I have had many, many patients who qualified by the standard markers, came on to hospice and remained there for a long time beyond the six months. Once qualified, patients with an ALS diagnosis are entitled to remain on hospice as long as it is useful to them, even if that is a year or even two! To me, the term "less than six months" is not a true depiction of what to expect when it comes to ALS patients on hospice, but that said, families who are approached by their doctor or other healthcare professionals as "appropriate" for hospice have to be ready emotionally to come on to the program. Postponing hospice, because one fears that you are starting the "six month" clock, means living without some wonderful services that you are entitled to have. Often it is those families who have had previous positive experience with the benefits of this program who can embrace hospice early on. Once hospice is begun you will suddenly be a part of a wonderful process. Hospice is an interdisciplinary team approach to care, available to you 24 hours a day, seven days a week. As you work with the hospice team you will still have control over decisions about your life and your care. You will also retain a relationship with your primary care physician. Visiting team members include; the nurse, who examines the patient each week to monitor the patient's condition and to provide appropriate care to maintain the patient's comfort; a social worker who works with both the patient and the family members to insure that they are coping with the challenges of life; chaplains who assist in the religious and spiritual needs of the family; home health aides who help with the physical needs of the patient and trained volunteers who lend a hand in enhancing the family's quality of life. That is really what hospice is about. It is the provision of palliative (reduction of suffering) services and medical support to help families live with the highest quality of life available, during the end course of an illness. Doctors often recommend a particular hospice at the time of qualification but each family can select the hospice of their choice, since there are numerous companies who provide hospice services and as the consumer you are the one who should choose the one that is best for you. The services that each provides will vary, with some providing two hours of nursing aid care for five days a week and others providing 4 hours for seven days a week. Families can ask for hospice teams to make a presentation to them before they enroll, during which you can ask specific questions about what supplies they make available and if they have any special services such as massage therapy or aroma therapy, etc. In most hospices medical supplies and prescriptions are delivered directly to your door. Family plays an important role in hospice and a designated family member or close friend will serve as the hospice contact person. Because hospice takes place anywhere that people call home, hospice team's work in private houses, apartments, nursing facilities and hospitals. There are still some free standing hospice facilities but they are primarily used by those who are very close to the end of life. Hospice is a palliative care service designed to enhance life's quality, reduce the pain and suffering of diseases such as ALS, and help families cope with the challenge of caregiving. Hospice helps families to celebrate and live life to its fullest. It is the family who defines what their needs are and hospice's role to respond to those needs. Hospice can greatly enhance your life… if you let it! Toby Tider, LSW, MSW, Evelyn Richardson, RN Family Choice Hospice (732) 396-1200
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