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All the passages below are taken from the book, “Leaving This Life With Hospice: Stories of Wonder and Hope” by Margaret Ledger. It was published in 2005.
You matter because you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die. —Dame Cicely Saunders, Founder of Modern Hospice
Accepting life expectancy is limited
Coming to the decision to stop chasing a cure may be the hardest thing you ever have to do. Many people leave the decision so long that they only have couple of days before they die. Some never make any decision at all, but they die anyway. When a bereaved person tells me about the illness of their loved one, he so often says, “I wish we had known about hospice sooner.” Some people feel guilty later that they pushed their dying loved one into trying to go on, when helping them die peacefully would have felt better in the long run for both of them.
I know from experience in my own family and in other hospice families that there is an alternative to struggling to cure until the end. Some people have been fortunate enough to stand witness to a peaceful, loving ending where the patient himself seems to be a source of love. This experience is still a painful loss of a loved one; however, there is a sense of fulfillment, and the comfort of knowing this was as good as it could have been.
Hospice was based on the premise to help you live until you die, that you live your life to the fullest extent possible for as long as you live. It is really about a way of approaching death that focuses more on the quality of life that you experience toward the end of your life, than chasing the illusive cure. Hospice in the United States provides support for someone dying at home or sometimes in a resident hospice. Sometimes hospice support is provided within a nursing home setting. The philosophy and methodology of hospice, that of comfort care and aggressive pain relief, is becoming a method of care available to everyone no matter where they live. Today, people often come under hospice care only for the last few days of their lives, instead of the months that would have allowed them and their family to come to a more leisurely closure.
Explanation of hospice service
The word “hospice” has become synonymous with “death” and therefore a word and a subject people shy away from. Hospice does nothing to prolong life or to hasten death, but can truly offer patient and families great support over the last few months.
Dame Cicely Saunders founded the first hospice, St Christopher’s Inpatient Hospice in London, in 1967. The usual model of hospice in England continues to be special places of residence where dying patients could live and be cared for until they die. In this country today, hospice usually means a team of specialists supporting a patient and his caregiver in their own home. There are some hospice units in hospitals, nursing homes or built for this purpose.
My experience has been with the common form of hospice available across the country, that which supports the dying person in his home. Most of my discussion and my stories relate to this kind of care. The term, hospice, refers to the type of care provided regardless of the location in which it is delivered. Resident hospices are readily available in some parts of the country, most particularly in metropolitan areas.
Hospice care is delivered through a team concept: the patient’s regular doctor stays involved, but the hospice team includes a medical director, nurses, home care aides, social workers, spiritual and bereavement coordinators and volunteers. This interdisciplinary team reviews the status of each patient weekly. Different services can be given in the home when needed and desired by the patient and his family. A nurse is assigned to each patient. She will visit or be on call for any questions or problems that come up. Personal care will be provided by the aides in the home each day as needed. A social worker will visit, too, and support the patient and family. If the patient desires, the spiritual coordinator will visit and volunteers can be utilized to give the caregiver a chance for a break. These volunteers are carefully selected and trained by the hospice organization.
In the weekly team meeting, the nurse will talk about the progression of the disease, the symptoms, and the comfort of the patient. The social worker will talk about the family situation and what other help might be needed. The medical director will suggest medication and care changes if needed. The medications are likely to include liquid morphine. Keeping the patient pain free and comfortable is an important goal.
Hospice care also includes bereavement support to the family for twelve months after the death has occurred. This will include calls, mailings, visits and support groups.
Under today’s Medicare and insurance company rules, a patient can be under hospice, only if his doctor can declare he is unlikely to live more than six months, and the patient may be asked to sign a “Do Not Resuscitate” form. That can be a hard decision. When are the patient and family ready to accept so clear a definition of the outcome? Palliative care is an intermediate step, under which the patient can receive treatment for symptom control to make them more comfortable, although they are not expected to effect a cure, as well as hospice home care and pain management. Hospices are now also offering palliative care. The patient may be classified as palliative if there is no hope of a cure, although the life expectancy may be longer than six months. Palliative care is more likely to suit people in earlier stages of the dying process. There would be a smooth transition to hospice care when the patient decides to stop pursuing treatments.
In this country reimbursement for hospice services comes from Medicare, Medicaid, health maintenance organizations and other private insurance plans. If the patient is at home, and requires hospice, any of these plans covers the cost, although some insurance companies’ coverage is limited in duration. If the patient needs to be in a nursing facility, Medicare will cover the cost in approved facilities after a qualifying hospital stay. If there is no hospital stay, then Medicare covers the cost after assets have been depleted. In some states, Medicare pays for care in a hospice facility without the qualifying hospital stay. Many hospice agencies offer care on a private-pay, sliding fee scale or charitable basis for those who have insufficient insurance. Speak to your local hospice if you want to pursue one of these options.
Funding for hospice home care covers the cost of the full hospice team: medical director, nurse, home care aides, social worker, spiritual coordinator, volunteers, and bereavement coordinator. The funding also covers costs of medications and needed equipment for the home such as a hospital bed, commode, lift etc. Medicare and insurance companies’ funding of palliative care includes the treatments, and services of a doctor, a nurse and home care aides, a social worker and a spiritual coordinator but exclude drugs, and bereavement support.
Ironically this kind of care is not an expensive solution either, compared to the massive amounts of money spent on aggressive care in the last six weeks of life, which account for eighty percent of medical costs. Maybe the health care establishment wants to continue the status quo, because the way of a peaceful death may significantly reduce health care expenditures!
Aggressive pain relief
Hospices have developed excellent models of managing pain and most of the time they can control the patient’s pain. They do leave the patient to make the decision on tradeoffs when being totally free of pain means they would be sleeping more than normal. Some patients choose to keep doing all they can and are willing to accept some pain in order to do that. Hospice nurses very carefully adjust the amount of medication upward so that the patient receives just the right amount to control the pain but not an excess to make them feel “out of it.” The timing of pain medication is to suit the patient, not a hospital routine. Addiction may be a concern, but when pain medication is carefully increased to match the demand of the pain, then addiction does not occur. However it is strange that addiction is an issue when the person is dying.
Hospice workers tell many stories of people who were able to come to a resolution of their lives while on hospice care, and die a truly peaceful death. Ninety percent of people say they want to die at home, and hospice care in their own home may be all that’s needed. We all deserve to get the supportive loving care at the end of our lives that hospice can provide.
There are nearly forty million seniors in the US. In the next thirty years that number is expected to double as baby boomers reach age sixty-five. These people are likely to place high importance on dying well just as they have emphasized living well. As more and more discussions are taking place in the media. The topic of death and dying is coming out of the closet.
We should all be entitled to good end of life care, whether we are at home, in a nursing home or in a hospital. It should be hospice-like care, staged to provide palliative treatments, expert pain management, and aggressive comfort care, staffed with doctors, nurses, aides, social workers, volunteers, spiritual and bereavement coordinators and counselors who have chosen to do this work. It has become part of the right to the pursuit of happiness.
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