Hospice focuses on caring for people physically, socially, emotionally and spiritually throughout their end-of-life treatment. The hospice philosophy is holistic supporting not only the person but the entire family. Medicare covers hospice for individuals with an incurable illness most likely limiting their lives to less than six months based upon a physician’s diagnosis. The Medicare Handbook states that the benefit includes covering drugs for symptom control and pain relief, medical and support services from a Medicare-approved hospice, and other services not otherwise covered by Medicare such as grief counseling. The care may be given in your home or a nursing facility if this is where you currently reside and in an inpatient hospice facility. Medicare hospice care also covers some short-term hospital and inpatient respite care to relieve a caregiver.
Even though millions would benefit from hospice care every year, large numbers walk away from the service because they don’t want to make the choice of either accepting hospice or rejecting life-extending care. “For too many of those patients, “that’s not hospice; it’s last rites,” counters Dr. John W. Rowe former CEO of Aetna in a recent NYT article. Regretfully, many people believe signing up for hospice care is a sign of giving-up all hope, so they hold-off making the choice and lose the opportunity to receive emotional guidance, pain management, and coordinated care during the most heart wrenching time of their lives.
Medicare beneficiaries can sign-up for hospice care, opt out in the middle of that care and then rejoin later with no waiting period imposed. For example, you may have advanced breast cancer and are receiving hospice care but you’re offered a round of radiation therapy to slow down the growth of a tumor that could hopefully extend your life by months. In this instance, you may decide that you’d like to try the radiation therapy forcing you to end your relationship and care with hospice. Or, perhaps a blood transfusion would bring you much needed energy and you’d like to enhance the quality of your remaining time. The revolving door approach is confusing to families and patients and greatly increases the likelihood of them falling through the cracks in an already fragmented system.
But times are changing. A growing number of hospice providers, experts and insurers believe that this either-or choice is unfair and outdated given new medical advances that were not available since Medicare began covering the benefit over twenty years ago. Hospices throughout the country and locally are exploring an “open access” concept allowing patients to receive the palliative care of medical and social support that have become the hallmark of hospice care and be given access to medical advances that can slow down the course of their disease. “We’ve had a few patients receive treatment such as radiation and chemotherapy while in our hospice and we’ve seen other hospice programs throughout the country exploring this new approach, too,” reports Karen Paris, LSW and Director of Hospice of Central Pennsylvania. “Its goal is to help patients make transitions in their care rather than make an either/or choice.” Open access proponents believe they will be better able to support patients and families struggling with a life-limiting illness who do not wish to discontinue certain treatment regimens.
But Medicare officials contend that if people can receive both curative medical care and palliative (soothing) care at the same time, then their costs will soar. Yet those in the field report that patients who are not in hospice tend to use emergency rooms much more because they don’t have the 24/7 advice of nurses and doctors who understand the course of the disease and can help families care for someone at home. As a result, patients end up in the hospital at much higher costs to Medicare and in the least favored setting for a dying person. Medicare doesn’t ban a hospice from offering advanced medical care – they just won’t pay for it. But what hospice provider can afford including chemotherapy or other advanced medical procedures on a $130 per diem rate for routine care no matter what the patient’s condition?
The other side of the debate is philosophical. If hospice’s mission is to bring holistic care and comfort to those who have accepted that their life is coming to a close then embracing treatments seen as life-saving or prolonging undercuts that acceptance. It sends mixed messages and interferes with their spiritual and psychological development towards achieving a peaceful dignified death. And it seduces families into accepting futile and unrealistic attempts that deny the inevitable.
YOUR TURN
Should Medicare stop forcing people to choose between hospice care and advanced medical care intended to prolong their lives? Or does the system work well as it stands now allowing people to opt out whenever they want and rejoin when they need to?
14 comments:
My husband (70) and I (67) discussed your column and feel hospice should remain the way it is and true to its mission of providing end of life care and support. If people want to prolong their lives, they should use standard treatment options. Perhaps people need to be better educated about just what hospice does and how they do it. It is a valuable service. Let's not screw it up by trying to have it reach outside its mission.
I have the privilege of being both a hospice nurse as well as a hospice liaison for the past 4 years. As part of my responsibilities I educate physicians,patients,families and anyone who will listen about hospice. The "either or choice" in medicare is only part of the problem, albeit a big one. I find that patients and families often are not even being presented with clear information about hospice so that they can make an informed decision. When we send out satisfaction surveys to our families after the death of their loved one, the number one comment we here is "I only wish that we could have heard about hospice sooner". The hospice stigma of "having to give up hope", is wrong. We are all about quality of life. We counsel,support educate,and aggressively treat symptoms partnered with the patients own physician. We will never take away hope. If a patient hears of a new treatment, then we will discharge them from hospice and tell them to "go for it" with our blessing. We don't help people die, we help people live each day until they die. Jeanne McClintick, PinnacleHealth Hospice
(P.S. Hello Linda. It's been a long time since we shared a spectator spot on the bench at our son's Susquehanna Twp baseball games. Those were good times. I hope that your family is well. Sean is now a 3rd year teacher at Palmyra Middle School, teaching Health and Phys ED. (Imagine that!)
The government should not force people to get medical care to extend their lives. Hospice is a great and caring program which enables people to die with some dignity left. I would even go farther and with properly structured programs requiring Three Medical Doctors(with a referral from the treating doctor) allow the patient or their living will speak for them to provide doctor-assisted assistance to allow people the same priviledge we give to our beloved animals when we have to put them down with the assistance of a medical doctor,who happens to be a vet.
Having had numerous experiences with Hospice Care for elderly family members, I agree that Medicare guidelines often prevent persons in need from receiving care soon enough. For example, my mother-in-law was diagnosed with Leukemia and it was determined within a few days that it was untreatable. However, the doctor prescribed a medication that would make her more comfortable (this was also a drug that is used to help patients achieve remission)so she was not eligible for hospice care. She died only 17 days after diagnosis with hospice care beginning only 1 day prior to her death. The hospice staff were wonderful before and after her death. Since death was inevitable 17 days prior, it would have been a great support to her and our family to have had that support.
The Medicare requirement also serves to disuade patients from choosing hospice care and doctors from recommending it. Unfortunately many do not want to face the inevitable. Without the 6-month terminal criteria, many might choose hospice care. When my father started hospice care, the nurse who was seeing him at the time said "don't worry, we need to say this so that you can get more care." He died within 10 day of starting hospice. Had hospice begun sooner, he and my mother (his primary caregiver) may have had more time to enjoy their last days together and cope with the loss.
Changes need to be made.
Seems to me that the Hospice people need to do a lot more to let people know exactly what service they provide. Blaming the government-sponsored care plan for forcing people to make a decision that they reasonably should make - with their spouse, partner, family, doctor, friends - isn't a good answer. An "opt-in", "opt-out" system might be a paper-shuffling nightmare, compounded by hospital stays and nursing home stays.
The inclusion of hospice services in Medicare was a huge step forward. It is troubling that hospice care requires surrender. It isn't clear that the cost of allowing patients to both pursue recovery and accept end of life care would be so prohibitive.
One problem inherent in all of this is that of all the sciences, medicine is the least scientific. I'm not convinced that I would believe that there was no hope of recovery just because a doctor said so. At the same time, I might "need" palliative care given my condition.
We shouldn't treat medicine as more scientific than it is.
“My husband (70) and I (67) discussed your column and feel hospice should remain the way it is and true to its mission of providing end of life care and support. If people want to prolong their lives, they should use standard treatment options. Perhaps people need to be better educated about just what hospice does and how they do it. It is a valuable service. Let's not screw it up by trying to have it reach outside its mission.”
“My husband was in hospitals over 200 days before he died. I would have taken hospice care over any one of those days in the hospital but I was not able to have hospice care because he had chemotherapy and was totally dependent on IV nutrition. He died at home in his favorite chair at 53 years of age.”
“The hospice system as it is now works well by allowing people to opt out and rejoin. As some advanced medical treatment becomes an obvious choice for trying to prolong life, which most people want to do, they can simply opt out and then get back into hospice when they have finished with that option. I am a former hospice nurse for about 15 years.”
“I think if Medicare makes people opt out or accept the hospice situation then Medicare is only interested in saving cost and not interested in saving lives. And I think hospice is a kind of euthanasia.”
“I think a person entering hospice care has usually been through chemo and radiation and has accepted the inevitable. So once they are in hospice care, they should stay in hospice care. It’s too much of an emotional rollercoaster for the patient and the family to opt in and opt out.”
“I think hospice care is end-of-life care for terminal patients who do not wish to continue curative treatments. Hospice care givers strive to provide a calm and pain-free death for patients and support their families. If patients want to pursue medical treatment, then they don’t belong in hospice”.
“Leave the system as it is. Leave the system as—it—is! Let people do whatever they want to do. Thank you."
“Yes, Medicare should support hospice care. Hospice care is a wonderful institution, but they will need more volunteers and more paid counselors if they are going to go through allowing people stay in the program and receive curative care.”
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