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  1. I mean, he didn't even examine me, which he rarely does. (The CT scan pretty much tells him what he needs to know, so he says.) In addition (or is that subtraction?), he didn't even ask me the standard questions he typically does about my quality of life, activities of daily living, and general health and welfare. In fact, near the presumptive end of our appointment, as peculiar and uncharacteristic of an appointment as it was, I felt compelled to blurt out the answers to all the questions that he didn't bother to ask that for years he's always asked: any pain, shortness of breath, coughing, headaches, neuropathy, muscle weakness or any new or persistent symptoms? All he could muster was a perfunctory, "Do you need any prescriptions filled?" And then the semi, out-of-the-blue-bombshell: "Are you familiar with Palliative Care?" Followed by the offer to refer us to a book that he thought we might find helpful/useful. Helpful? Useful? I didn't say it at the time because the entire appointment was so odd and almost impersonal. But WHAT?! Palliative Care? What are you talking about? He has never brought up palliative care before? (Although way back when, he had given us a brochure entitled "Final Wishes.") You see, we know about palliative care. We've attended multiple conferences organized by LUNGevity, "the largest national lung cancer-focused non-profit in the country," where palliative care doctors often have spoken. Palliative Care is not hospice care but it's a transitional level of care to be sure. If I'm not transitioning, I wish somebody would have told me, and not by asking about my familiarity with this type of care. In a word, palliative care is a type of downsizing, as best as I can describe its subtleties; separate and apart from hospice care which is, if you don't know it, "the last train to Clarksville," if you get my euphemism (and hopefully someone is meeting you at the station). But so far as I've been told, I'm not on the last train to Clarksville or any other final destination. In fact, I rarely take the train. Not that being on or off the train matters when one comes to the end of the line. Nevertheless, as I review in my mind what my oncologist said this past Monday, I have to wonder if he was feeding me a line, throwing me a line or just reciting a line that is required of oncologists in their regular communications with their cancer patients, a sort of caveat emptor for long-time cancer survivors who are inexplicably still alive (as evidence of such sentiment, my oncologist refers to me as his "third miracle"). But I didn't feel much like a miracle on Monday. I felt more like a dope. Like I was being told something I didn't realize, sort of a king has no clothes 'something.' It was a feeling I had never experienced before; during or after any of our appointments. Previously, even at the initial Team Lourie meeting in late February 2009 when the hammer came down, I had, though having it in utter disbelief, a grasp of the obvious: "terminal cancer," with a "13 month to two year" prognosis to boot. The particulars of which would be sorted out over the following weeks and months beginning with my first chemotherapy six days later. And boy were they ever sorted. Ten years and almost six months later, I'm still sorting. Was I just given an updated "terminal" diagnosis/prognosis or was my oncologist merely having an off day? Obviously he knows that his words carry enormous weight and significance and create terrible burdens for his patients and their families. But he can't simply toss out the phrase palliative care like it has no impact. Its impact is huge. It's akin to being hit by a speeding train, the likes of which would prevent one from getting anywhere near Clarksville, let alone being on the last train.
  2. A Partnership of Palliative Care Palliative care teams are specialists who work together with you, your family and your other doctors. They provide an extra layer of support when you need it most. In addition to treating your symptoms, the palliative care team spends as much time as necessary communicating with both you and your family. They support you every step of the way. Where do I receive palliative care? Palliative care is provided in a variety of settings including the hospital, outpatient clinic and at home. Does my insurance pay for palliative care? Most insurance plans, including Medicare and Medicaid, cover palliative care. If costs concern you, a social worker from the palliative care team can help you. How do I know if palliative care is right for me? Palliative care may be right for you if you suffer from pain, stress or other symptoms due to a serious illness. Serious illnesses may include cancer, heart disease, lung disease, kidney disease, Alzheimer’s, amyotrophic lateral sclerosis (ALS), multiple sclerosis, Parkinson’s and many more. Palliative care can be provided at any stage of an illness and along with treatment meant to cure you. What can I expect from palliative care? You can expect relief from symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. Palliative care helps you carry on with your daily life. It improves your ability to go through medical treatments. It helps you better under-stand your condition and your choices for medical care. In short, you can expect the best possible quality of life. Who provides palliative care? Palliative care is provided by a team including palliative care doctors, nurses and other specialists. How does palliative care work with my own doctor? The palliative care team works in partnership with your own doctor to provide an extra layer of support for you and your family. The team provides expert symptom management, extra time for communication about goals and treatment options, and help navigating the health system. How do I get palliative care? Ask for it! Tell your doctors and nurses that you would like to see the palliative care team. https://getpalliativecare.org/handouts-for-patients-and-families/
  3. Pain Management: Palliative Care Palliative care is a special type of medical care that focuses on treatment of symptoms people may have when they are living with a chronic (longstanding) illness, such as cancer or heart failure. It is often compared to the hospice care that is offered to terminally ill people. In palliative care, the goal is to provide the best quality of life possible -- even if someone is not terminally ill. Palliative care can be used when a person is getting treatment for a disease and when there is no useful treatment for the disease. Features of Palliative Care Palliative care deals with the treatment of problems including pain, nausea, loss of appetite, depression, and fatigue. All symptoms are addressed, including physical, emotional, and spiritual problems. Another key feature of palliative care is its focus on the patient's family, as well. Chronic illness puts special stress on families, and having support can be very helpful. Talking about and planning for the future can help prepare a person and the person's family to make the best choices for everyone involved. What Is the Difference Between Palliative Care and Hospice? Hospice care is a special form of palliative care offered to those with chronic illness who may have less than six months to live. The focus is on caring for the patient and his or her symptoms, not curing the disease. All doctors can admit a patient directly to hospice. What Are the Benefits of Palliative Care? High-quality palliative care can make the difference between a comfortable existence and one that involves much suffering. Palliative care also can help a patient's loved ones begin to deal with the issues of grief and bereavement. Where Is Palliative Care Provided? Palliative care is being offered in more and more hospitals throughout the country. It may also be available in outpatient clinic or home settings. To find doctors certified in palliative medicine, go to the web site for the American Board of Hospice and Palliative Medicine at www.abhpm.org http://www.webmd.com/pain-management/guide/palliative-care
  4. The differences between hospice and palliative care. Hospice care and palliative care are very similar when it comes to the most important issue for dying people: care. Most people have heard of hospice care and have a general idea of what services hospice provides. What they don’t know or what may become confusing is that hospice provides “palliative care,” and that palliative care is both a method of administering “comfort” care and increasingly, an administered system of palliative care offered most prevalently by hospitals. As an adjunct or supplement to some of the more “traditional” care options, both hospice and palliative care protocols call for patients to receive a combined approach where medications, day-to-day care, equipment, bereavement counseling, and symptom treatment are administered through a single program. Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services. Place Hospice Hospice programs far outnumber palliative care programs. Generally, once enrolled through a referral from the primary care physician, a patient’s hospice care program, which is overseen by a team of hospice professionals, is administered in the home. Hospice often relies upon the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home, a specially equipped hospice facility, or, on occasion, in a hospital, this is not the norm. Palliative Care Palliative care teams are made up of doctors, nurses, and other professional medical caregivers, often at the facility where a patient will first receive treatment. These individuals will administer or oversee most of the ongoing comfort-care patients receive. While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team. Timing Hospice You must generally be considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits from your insurance. Palliative Care There are no time restrictions. Palliative care can be received by patients at any time, at any stage of illness whether it be terminal or not. Payment Hospice Before considering hospice, it is important to check on policy limits for payment. While hospice can be considered an all-inclusive treatment in terms of payment (hospice programs cover almost all expenses) insurance coverage for hospice can vary. Some hospice programs offer subsidized care for the economically disadvantaged, or for patients not covered under their own insurance. Many hospice programs are covered under Medicare. Palliative Care Since this service will generally be administered through your hospital or regular medical provider, it is likely that it is covered by your regular medical insurance. It is important to note, however, that each item will be billed separately, just as they are with regular hospital and doctor visits. If you receive outpatient palliative care, prescriptions will be billed separately and are only covered as provided by your regular insurance. In-patient care however, often does cover prescription charges. For more details, check with your insurance company, doctor, or hospital administration. Treatment Hospice Most programs concentrate on comfort rather than aggressive disease abatement. By electing to forego extensive life-prolonging treatment, hospice patients can concentrate on getting the most out of the time they have left, without some of the negative side-effects that life prolonging treatments can have. Most hospice patients can achieve a level of comfort that allows them to concentrate on the emotional and practical issues of dying. Palliative Care Since there are no time limits on when you can receive palliative care, it acts to fill the gap for patients who want and need comfort at any stage of any disease, whether terminal or chronic. In a palliative care program, there is no expectation that life-prolonging therapies will be avoided. It is important to note, however, that there will be exceptions to the general precepts outlined. There are some hospice programs that will provide life-prolonging treatments, and there are some palliative care programs that concentrate mostly on end-of-life care. Consult your physician or care-administrator for the best service for you. Reprinted from “Hospice vs. Palliative Care,” by Ann Villet-Lagomarsino. Educational Broadcasting Corporation/Public Affairs Television, Inc. Reprinted with permission. For additional caregiving information, visit www.CaregiversLibrary.org
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