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January, 2003

Hospice-A Quiet Revolution
By Carol Sterritt

Some twenty-six years ago a core group of Marin healthcare advocates undertook the establishment of the second hospice center in the United States and the first such center to grace the West Coast. Their hard work and dedication put Hospice of Marin on the map. It was a quiet revolution in healthcare which allowed for the dying to remain at home and receive medical care in familiar surroundings watched over by family and friends.

So what exactly are hospice services? Examine the case of an eighty-three year old man, as active in his Sausalito community as any forty-year old. Often he could be found on the hillside by his home, tending his fava beans, roses and fruit trees. His mother had lived well into her nineties, so his diagnosis that spring three years ago came as a hard blow.

"The thing is, I'm not in any pain whatsoever. I just lack my spark," he explained in reaction to a difficult medical verdict: pancreatic cancer with no recommended treatment and no cure.

Had this been three decades earlier, the medical establishment would have insisted he be hospitalized. Only then could he be assured of receiving the heavy-duty pain medications and around-the-clock care that his situation would eventually require. But thanks to the availability of hospice services that was not necessary. Hospice was called in and several full-time caregivers staffed his bedside, while an overall managed care plan drawn up by a hospice nurse directed his care. Additionally, he received pain-relieving medications and experienced a great deal of comfort from this service in his time of need.

There is a growing number of those facing death in the county who are experiencing the benefits of hospice. With an annual budget of five million dollars, care for eighty-five to one hundred patients is provided each day both here and in parts of Sonoma. Hospice assists those in need with its services wherever the patient happens to be at home, a nursing home or a residential care facility.

It is easy to understand hospice's appeal. Most people prefer their home to a hospital room. They enjoy the comforts of their home without the $1,500.00 a day hospitalization. They are pleased with a daily routine structured around their personal needs and not those of a busy hospital staff. Hospitals provide many things, but in general are impersonal, brightly lit, too hot or too cold and often noisy. There also is the inconvenience of family members needing to organize transportation to and from the institution and the further limitations of visiting hours. Often a terminally ill senior has a spouse who suffers from a disability and this spouse faces a huge burden in trying to shuttle back and forth between home and hospital. And who among us would want their last meal to consist of hospital food?

In its early days hospice did face a difficulty or two. The medical establishment was understandably reluctant to cooperate. Was the best place for terminally ill patients their own quite, comfortable home or a medical institution with all its many resources? These resources include all the modern technical appliances and gadgets.

But those enthused with the idea of hospice care had a different notion. Diagnostic equipment and other hospital conveniences are of great value to someone who is sick and curable. But if there is no cure, what is the good of test and evaluation devices? Their relevance to a terminally ill patient is very limited. When one is dying, the focus should be on relaxing, letting go and saying good-bye. These activities are more easily done in one's own home than in a hospital setting.

Some of the establishment's concerns were quite valid. Who would oversee the administration and safe-keeping of potent drugs like morphine? How would an individual needing care 24/7 provide for staffing? Hospice of Marin took the challenge and developed successful strategies to address these issues.

Consumers themselves demonstrated that they were anxious to receive this type of care for themselves and their loved ones. As hospice made inroads case by case across the county, individuals realized the value of having an entire hospice team at hand: physician, nurse case manager, home health aides, social workers and counselors, chaplain and volunteers.

As the consumers became advocates for hospice, the medical establishment was won over. This local acceptance encouraged traditional medical professions to create a successful partnership between themselves and hospice. Often when a patient does receive an evaluation that their illness is terminal, the physician is the one to suggest hospice. Yet an innate obstacle to hospice care remains: For any individual it is always difficult to accept the idea that life is ending. Sometimes medical advice is conflicting and sometimes, although the medical advice is realistic about prospects for recovery being poor, the patient may not feel all that bad. How does an individual grapple with the issues of impending death? All of us have experienced ample empirical evidence that it is always the other guy who dies. So why should this illness today be any different? Isn't it possible we'll beat this too?

An example of a case where hospice was not approached for care and that lack resulted in misery for a family and the patient was the following: A seventy-nine year old man had his right leg amputated due to complications from severely impeded circulation. Both his doctor and attending physician here in Marin saw his condition as terminal. The only pain reliever they offered the patient was Tylenol, even though he was in agony. Gangrene appeared in the remaining areas of the leg. The doctor proposed further surgery (i.e. more amputation) and still only Tylenol was prescribed. The family finally obtained morphine for pain and shortly thereafter the patient died. If this family had employed hospice the patient would have had an advocate for the stronger pain medication earlier and the family would have had better oversight of the case.

Both Mary Taverna, founder and current president of the Hospice of Marin Foundation and Betsy Gornet who serves as CEO for the service branch hope that every person in Marin becomes aware of hospice. According to Betsy Gornet, people should know that under most private insurance plans, HMOs and other managed care organizations, hospice care is available to beneficiaries and their families at little or no cost. In addition, through community contributions, memorial donations and foundation gifts, Hospice of Marin is able to provide services to patients without regard to their ability to pay. If you or anyone you know is in need of hospice, call the Hospice of Marin at 927-2273.

 

 

 

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