Hospice / MediCare's Hidden Treasure
“Many may know of a family member, close friend or neighbor whose final days on earth were made more peaceful and less painful through the compassionate services offered by a hospice provider. Yet according to a recent federal study, this government benefit for the terminally ill may be under-used by thousands of dying patients every year”
U.S. Senator Chuck Grassley, Senate Special Committee on Aging.
In 1982 Congress expanded the Medicare insurance program to include hospice care, thus providing coverage for many health and social services for the terminally ill. In conjunction with Medicare, hospice was then able to offer much needed physical and emotional assistance to both terminally ill patients and their families.
The question facing the Special Committee on Aging was to find out why Hospice benefits are not being used until the end of life. Why do families refuse to access comprehensive help that could assist them with the care of a loved one? Why do they wait until the final days before seeking in-home help? Why do many families burden themselves financially when Hospice can be available at no cost?
I understand why. I have had the experience of living through the dilemma of placing a loved one into hospice care. I did not believe that the time of my brother’s death could be predicted. I simply wasn’t able to cope with the requirement that the patient be eligible for Hospice if they are terminally ill with an estimated six months left to live. When I thought of asking the doctor for a referral to Hospice, I felt that I was placing my Alzheimer’s afflicted brother in the position of standing before a judge and being given a death sentence. I simply blocked out the word “estimated.”
Another area of concern was palliative care. Rumors and negative comments had frightened me. I was completely uninformed until recently when I looked up the word “palliative” in Webster’s Dictionary. Webster’s defines “palliative” as “that which mitigates, alleviates or abates the violence of pain, disease or other evils.” (I suspect many would choose that definition to describe the end-of-life experience.) I had struggled with the concept that nourishment and fluids might be withheld at Hospice. In the meantime I watched my brother, Marshall, refuse to eat or accept fluids. He was fading away while I refused to accept the fact that further medical treatment was not possible for someone so frail.
I kept hoping for some new medical procedure. I now realize that, as human beings, we have been trained to seek medical intervention until the very end. We believe that there is still something we can do. In that believing, we may subject our loved ones to more medication, surgeries, procedures and injections. I had to accept the obvious facts and understand that my trust needed to be placed in those at Hospice who certainly were more knowledgeable than I.
During my conversation with San Diego Hospice medical professionals, I have since learned that dying patients respond differently to food and fluid than people who are healthy. A small bite or a sip of fluid may be enough to relieve hunger and thirst. They will lose weight regardless of the amount of food intake due to malabsorption . . . the point at which the body is no longer able to obtain nutrients from food. Intravenous fluids may help for a short time, but they are not food nor do they help to prolong life. As the patient weakens, intravenous fluids may simply build up in the body and cause discomfort.
With a little knowledge, I began to research why I permitted my uniformed fears to persuade me not to apply for Hospice assistance. It became clear that top-quality palliative care could mean the difference between a gentle death and one in which suffering is terrible and prolonged. I discovered that Hospice truly offers a death with dignity. The goal is not to cure. Rather, Hospice care is meant to provide comfort and a peaceful quality of life until the end of that life. The focus is not on death but on professional and compassionate care for as long as the patient lives.
So during the time that I refused to focus on the inevitable, I existed with the most acute form of denial. In doing so, I failed to receive the assistance that would have eased the stresses and pressures of our daily life. I kept fighting a losing battle. It was only at the end of my brother’s life that I reached for the help I needed. A few days after his admission, Marshall died peacefully and gently under Hospice care.
I waited too long and I really should have known better. My family is not unfamiliar with Hospice procedures. My uncle and aunt both died at the in-house facility of our San Diego Hospice. Marvin, my uncle, was also there only a few days before his death and during that time my family received exceptional consideration. We stayed beside him through his passing and long after he was gone, we remained without interruption and without any questions or interference on the part of Hospice staff. We were allowed to stay and comfort his widow until she was ready to part from him. Everyone at Hospice supported our efforts with great compassion.
Marvin’s wife was also a Hospice patient. She had been suffering from emphysema for more than a year at the time of her husband’s death. Her condition had been diagnosed as terminal and she continued to remain under the umbrella of Hospice care. She didn’t die within six months, though it appeared that death was imminent several times during her long, fatal illness. Twice she was taken to the San Diego Hospice facility and twice she recovered sufficiently to go home. Because she was terminal, Hospice care continued for almost two years.
I visited my aunt at her home often and watched the help she received. It was wonderful. Someone from Hospice provided for all her personal needs. Three meals a day were brought to her. A volunteer did her grocery shopping and pick up her prescriptions. Arrangements were made with the mailman to deliver mail into her home. I watched the considerate care she received and, I repeat, I should have known that this level of care was available to my brother. But I was in denial and could not accept the fact that my brother was dying. What I sacrificed as a result of my denial can best be described in a letter that I received from Jan Cetti, President of the San Diego Hospice.
I wrote to Mrs. Cetti after I completed a book I had written pertaining to my life as an Alzheimer’s caregiver. I decided to send the letter because I felt I needed her approval for my description of Hospice. Her response contained the following paragraph:
As I read your story, I was so sorry that you did not have hospice care much earlier. Though your experience with hospice at the very end is a familiar situation, we could have provided so much more assistance. Congress recently commissioned a study to determine why people do not access the hospice benefit until the last few days of life. The majority of eligible patients receive less than 14 days of care, when the Medicare Benefit was designed to provide comprehensive care for the last six months of life. They found many barriers. One very large barrier is both physicians and families worry that turning to hospice means “giving up” on a loved one. While the facts indicate that hospice care – good pain and symptom control – actually prolongs life in some situations. And the assistance for caregivers is enormous. The comprehensive care you were entitled to included, free of charge to Medicare beneficiaries; respite care, home care nurses, social workers, homemakers (to help with all types of household chores), certified nurses aides to help with bathing, skin care, etc., counselors, volunteers and home visits by hospice physicians (if approved by your bother’s personal M.D.)
I spent many years being my brother’s only caregiver. I did all the things that the comprehensive care could have done for me. I slept less and worked at tasks beyond my strength. I watched my face and body age more rapidly under the stress and effort. I did expect that my body would age with the passing of time. But I did not expect that I would lose so much of the energy, strength and the enthusiasm I that I always had for life. I have no guilt about the way I cared for my brother. I do have guilt about the way I cared for myself.
I resent the radical change in my appearance that happened during the last six difficult months of his life. That was when his needs became most demanding. He could no longer shower, brush his teeth, dress himself or change his underwear. I struggled to do the laundry, maintain the normal care of our home and attend to all his personal needs. It would have been much easier for both of us had I called the San Diego Hospice for help. But I failed to remember that Hospice offers so much assistance. And again, I forgot what the word “estimated” means when it comes to qualifying for Hospice care. My brother didn’t have to die within six months to receive Hospice benefits. In fact, he may have lived a little longer than six months. The point is, care was available. The time of death was only an estimate. So why did I fear a “maybe” timetable of an inevitable event?
Now I ask myself, “How does one get past the denial, past thinking that the life of your loved one will go on and on? How does one get over the guilt of believing that they are assigning death when they access Hospice?” I believe a caregiver has to begin by facing the fact that death will come and take their loved one from them. They must understand that neither they, nor Medicare, nor Hospice can know when death will occur. They have to realize that even the doctor can only estimate the time of death. As they remove the barriers, they begin to understand that by receiving Hospice benefits they’re helping their patient as well as themselves.
Caregivers may also come to realize that, in allowing outside help, they are not giving up on their own responsibilities. That a caregiver might feel that way is understandable. The long period they spent caring for their loved one may have become a way of life and could be difficult to change. Sometimes I liken it to watching their first child leave home. The “Self” gets involved in that, too. The sense of “responsibility” is weakened. In the loss of that responsibility, the benefits to their child (or patient) may not always be recognized. But letting go is very hard. I think I was involved with that struggle. I felt that I needed to be all things to my beloved, ailing brother.
The truth is that caregivers may have too many demands on their time. These demands can prevent their ability to remain calm and receptive. As the patient’s desire to be near them becomes more intense, the responsibility of the home, laundry, banking and shopping becomes harder.
It is then that caregivers need to come to the realization that they do require help and that what they want is exactly the type of help that Hospice offers. Scheduled and adequate assistance can truly relieve them of their stressful burdens and allow them to best care for the emotional needs of their patient. Those needs include their presence, their understanding, their awareness of the problems that arise, and their ability to handle them. Of most importance is that their presence offers security which, when combined with love, offers their patient a peaceful existence.
Caregivers who keep their afflicted family members at home while receiving hospice benefits are doing a remarkable job. Love and compassion are part of the caregiver’s efforts. Care and compassion are part of Hospice’s efforts. Those wise people who reach for help are not giving up nor are they limiting the life of their loved one. The time of death is set beyond their ability to change it. Placing a family member under Hospice care does not end the patient’s life nor is it designed to prolong their life. It only helps make life more bearable for the patient and the one who cares for them.
According to Senator Grassley, “Hospice care is Medicare’s hidden treasure.” It is time for families of dying patients to discover it.
THE MISCONCEPTIONS OF HOSPICE
Hospice is a place.
It can be, but generally is not. Hospice care takes place wherever the need exists, most often in the patient’s home. Approximately 80% of hospice care takes place in the home.
Hospice is only for people with cancer.
Forty-three percent of hospice patients have other chronic illnesses, such as heart and lung diseases, Alzheimer’s and Emphysema. In urban areas hospices also care for patients with end-of-life HIV/AIDS.
Hospice is only for old people.
Although the majority of hospice patients are older, hospices serve patients of all ages. Many hospices offer clinical staff with expertise in pediatric hospice care.
Hospice services can only be provided for six months.
There is no limit on how long an individual beneficiary can receive hospice services, as long as they meet the eligibility criteria. If a physician continues to properly and conscientiously recertify the six-month prognosis, a beneficiary can continue to receive hospice benefits.
Hospice is only for people who can accept death.
As a family-centered concept of care, hospice focuses as much on the grieving family as on the dying patient. While those affected by terminal illness struggle to come to terms with death, the hospice gently helps them find their way. The hospice teams of professionals and volunteers address the emotional, social and spiritual needs of both patient and family members.
Hospice care is expensive.
Most people who use hospice are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services and requires little, if any, out-of-pocket costs. This means that there are no financial burdens incurred by the family. In sharp contrast are the huge financial expenses that occur when hospice is not used.
Hospice is not covered by managed care.
While managed-care organizations are not required to include hospice coverage, Medicare beneficiaries can use their Medicare Hospice Benefit anytime, anywhere they choose. Those under 65 are likely to gain access to hospice care upon inquiry.
Hospice is when there is no hope.
When death is in sight, there are two options: submit without hope or live life as fully as possible until the end. The gift of hospice is its capacity to help families see how much can be shared at the end of life through loving personal and spiritual connections.
Vailia Dennis-17088 Cresta Dr., San Diego, CA 92128-Phone:(858) 487-8374 E-mail:
vailia@pacbell.net
