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I very much appreciate your comments, and I'm very pleased you tuned in to "On Dying Well". Of course, an hour is a very short time for such a large issue. I invite you to go to the Oregon Hospice Association's website at {www.oregonhospice.org/}, which is currently being updated. Or call us at 888/229-2104. You can join us in our efforts to help people understand what we can realistically expect at the end of life.

I'm pleased that most of you have had good hospice experiences. I offer my apologies to those of you who have not. We'll try to do better.

Some responses to your comments:

1. Volunteers do indeed play a very important role in the direct care of hospice patients/families. Every hospice uses volunteers and every hospice provides extensive volunteer training, so that volunteers are prepared and comfortable in the patient's home. Volunteers also play an important role in hospices and at the Oregon Hospice Association. We always have more work to be done than qualified people to do it.

2. Hospices are reimbursed by Medicare, Medicaid (the Oregon Health Plan), insurance plans, and private pay. But they also rely on the generosity of donors to make up the difference. The Oregon Hospice Association relies on public contributions for 75 percent of its annual budget. I can assure you that we put every contribution to very good work.

3. There is an information gap that can get in the way of a timely referral to hospice. Patients/families often wait for doctors to tell them bad news, assuming the doctor will let them know when they need to hear it. Doctors wait for patients/families to ask, letting the doctor know that they are ready to hear bad news. These are not easy conversations at any time.

I recommend that people give their doctors permission, early in the doctor/patient relationship, to talk openly and honestly about their condition. To tell the truth. Or to NOT tell the truth. I recommend that people ask their doctors about his/her preferences, too. How will he/she manage pain? Respect your wishes, if you do, or do not, want certain treatment.

4. 80 percent of Americans would want to know that they have terminal cancer or a limited life expectancy. They may have things they want to get done, for instance.

Health care workers worry that they will take away hope. They mean well, but what they may really be taking away is an opportunity to live the last months and weeks of life in comfort and dignity.

5. Many Americans are concerned about being hooked up to machines and kept alive, when there's no hope. We sent hundreds of advance directives to people when Terri Schiavo's feeding tube was to be disconnected. You can download an advance directive from our website.

There are many mixed messages. When doctors agree to another round of chemotherapy or radiation or offer artificial hydration and nutrition, patients/families believe that there is a chance. And usually there is! But an unpublished study on our website revealed that people who were referred late to hospice were more likely to have experienced (1) an unnecessary crisis resulting in a 911 call; (2) curative treatment that added nothing to quality or quantity of life; (3) increased pain and other symptoms.

6. There is no reason for anyone to die in pain. Dying Oregonians, in fact, have a right to comfort measures at the end of life, including medication. Most pain can be relieved effectively, although a few people may require sedation to make them unaware of distressing symptoms. Sometimes tradeoffs are required between being alert and being free of pain.

7. Nor is there a good reason why people who are still seeking treatment should suffer discomfort. Why should someone have to wait until their last six months of life to achieve comfort? Most hospices and hospitals offer palliative or comfort care.

8. Again, we need to know how to advocate for ourselves and our families. Ask your doctor, or your loved one's doctor, to make a referral to a hospice or palliative care team for an informational visit or a pain consultation, if there's a decline in health. Hospice workers are uniquely qualified to identify signs that life is nearing its last stages. Call a hospice, if you don't have a doctor. Many can help a family find an attending physician.

9. Don't say "no" to hospice, until you learn what it is hospice has to offer! Hospice is for people who are estimated to die in six months or less. There is no limit to hospice care, however. Even people who are in denial have a right to hospice.

Hospice is a win/win. If people get better, they will be discharged. If they don't like it, they can leave hospice care. If their condition changes, or their mind, they can be readmitted immediately.

To those of you who have lost a loved one, I offer my condolences. And I thank you for your interest in end of life care.

With all best wishes,

Ann Jackson

Ann Jackson, MBA
Executive Director/CEO
Oregon Hospice Association

posted 5 years, 2 months ago
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