Tiptoeing into a New Life


SaulFriedman75x75 Pulitzer Prize-winning journalist Saul Friedman (bio) writes the weekly Gray Matters column which appears here each Saturday. Links to past Gray Matters columns can be found here. Saul's Reflections column, in which he comments on news, politics and social issues from his perspective as one of the younger members of the greatest generation, also appears at Time Goes By twice each month.

My cancer doctor told me in writing, that I had six months to live. But he acknowledged he could not be sure and that the six months could be extended indefinitely.

That made me eligible to take advantage of a little understood, free Medicare program that has been enhanced by the new health insurance reforms, and could be available to anyone with a prolonged, chronic, life-threatening illness. I’m talking about the Medicare/Medicaid hospice program.

Until recently, entering a hospice program was frightening because it meant you understood you were dying and you voluntarily agreed to forgo chemotherapy or any other curative treatment, and were given only palliatives, painkillers and bedside help from professional whose job it was to make you comfortable.

All that has changed. As Dylan Thomas told us, we should “not go gentle into that good night.” So hospice should no longer be feared and avoided like the “dying of the light.” Rather, it should be embraced as a fine, comprehensive, home health care program.

A little background: In 1995, Medicare was under assault from the Republican Congress led by Newt Gingrich. Specifically, Medicare’s funds were cut to pay for private Medicare HMOs. And Medicare was criticized for the amount of money it was spending on the care of beneficiaries in the last year of their lives. Indeed, it accounted for a third of Medicare spending.

Medicare responded with its pioneer hospice program to care for the dying. Hundreds of hospices were founded around the country, most of them funded by Medicare which included nurses, social workers and devoted volunteers who became the providers of palliative care for the dying.

Private insurers followed with coverage of hospice services, but private insurance carried heavy premiums; Medicare covered 100 percent of hospice costs.

I watched how it worked for a close relative who was dying of lung cancer and his family. Hospice supplied the hospital bed set up in the home. Hospice supplied the drugs he needed for pain as well as the care to keep him clean and comfortable. And hospice helped with bereavement counseling for his wife and son.

Then, as now, he was admitted to hospice because his doctor attested that he had less than six months to live. He died three months after his diagnosis. But remember the columnist Art Buchwald who cheated death and remained in hospice care for much longer than six months?

Because such predictions are more and more uncertain as treatment options have become available, the courts forced a change in Medicare regulations. A person could not be discharged from hospice because he lived longer than six months; the six months could be renewed indefinitely.

Since 2007, Congress and Medicare have realized that with medical advances such as the CT-Scan, PET-Scan, open heart and by-pass surgery, radiation and chemotherapy, Medicare could not insist that hospice patients cannot take advantage of these possibilities while fighting his or her disease. Medicare and private insurers adopted an “open access” policy, admitting into hospice – for curative and/or palliative treatment, as long as a doctor said they had no more than six months to live.

Thus hospice has become a comprehensive health care program for the seriously ill, who may or may not be close to death. Indeed, as I have learned, it is not at all rare that a beneficiary can get well enough to graduate from hospice. My hospice expects me to be one of those beneficiaries.

In the meantime, hospice assigns to a beneficiary a nurse who comes by your home regularly to check your vital signs, see how you’re doing and help with chronic or even acute medical problems. Even more important, the assigned nurse or another nurse is on call 24/7. That means that if there is an emergency, such as a urinary problems, or the side effects of the chemotherapy, you need not go to the emergency room.

I’ve learned that the hospice nurse on call is equipped and trained to deal with such problems. No longer do I need to call 911 on a weekend and go to an emergency room. Besides being traumatic and tiring, it would cost Medicare hundreds, even thousands of dollars.

Similarly, while a hospice beneficiary may keep routine appointments with doctors, hospice nurses are equipped to deal with colds, the flu and other ailments that would ordinarily send you to a physician at Medicare’ expense. And hospice will help a patient’s oncologist by drawing blood often to keep track of possible problems such as a drop in the red or white cell counts or potassium and iron levels.

Thus hospice becomes your caregiver in fighting the disease as well as preparing for the worst. Medicare hospice, for example, supplies beneficiaries with kits that include morphine and other powerful painkillers; I’ve put my kit away and have almost forgotten about it. The best option is to avoid hospitalization for your illness for Medicare requires that hospital patients forgo curative treatment.

In addition, Medicare hospice assigns to beneficiaries a licensed, professional social worker to help family caregivers with advice, counseling and resources to help patients and families cope with the stresses of life-threatening and debilitating illness. Hospice may supply a hospital-style bed with linens or oxygen, or an IV to prevent dehydration.

The recently passed health reforms expanded curative and palliative hospice care for children in Medicaid or the Children’s Health Insurance Program (CHIP). It allows children enrolled in either program to receive hospice services without forgoing curative treatment. The Centers for Medicare and Medicaid Services (CMS) are expected to require states to comply with the changes, which are to take effect in 2013.

Finally, as of next January 1, the reforms will require that a nurse practitioner or doctor must have a face-to-face encounter with the patient at the end of the six month period to recertify his/her eligibility.

You can read or download and print [pdf] Medicare’s 16-page booklet on its hospice services, including where to find a hospice near you.

Write to saulfriedman@comcast.net


Saul, I'm sorry that your prognosis makes Hospice an option for you. It's so generous of you to use this as an opportunity to share your knowledge with us. Thank you.

Saul, if there's a heaven, I mean the good kind where everyone's included, and if that heaven has a parade, you will be the grand marshal.
Thank you for using your time here on earth to help the rest of us.

Saul--You have packed a lot of information into easily digestible form. Thank you. My own beloved father-in-law took advantage of Hospice care for at least three periods during his last several years (note the several) - proof positive that Hospice care does not necessarily signal the end. May you be on/off Hospice for years to come.

Saul, you are only of the truly good. I hope you don't mind, but I am tweeting this post. You should be heard as widely as possible.

Thanks so much for this, Saul. Sounds as if hospice will only get better under the reform. May you live long and test it out!

My partner's mother talked herself into hospice in 1999 and proceeded to live a year and half. She was eager to get in because she could get more home help paid for once she joined. The nurse, social worker, and even the somewhat abused home health aides were marvelous people who did everything they could to make a raging individual comfortable. This work may be a spiritual calling as well as a job.

Even if it was in writing from your doctor, it ain't necessarily so. Many hospice graduates over the last few years have proven it again and again. I've known several who used the hospice program. No matter how many or how few, however many days you've left, I hope you're blessed with the peace of knowing you've done your best for as long as you could.

Saul, your beautiful personal/political post today will be shared by me with many others in the CCRC where I live in Portland, Oregon. Though people here know about hospice, always great value in more consciousness-raising. This become clear when one of our residents, a physician, gives presentations about hospices/choices and the meeting room is packed to overflow.

Thank you again for your generosity.

Thanks for all the comments and good wishes; my last CT-Scan showed the tumor has shrink to barely percepyible size.

And may it continue to shrink as you reap the benefits of one of our government programs that actually work. My Dad's hospice care was there when we needed them with just enough of everything. I wish you the same.

Best of luck, Mr. Friedman. Hospice helped all of us in my mother in law's last days. We should have gotten it sooner. I'm glad you are getting it now instead of waiting too long.

Thanks very much for this, and I have sent a link to your article on to friends who need it.

Hugs from here.........

This information is invaluable and it is made even more powerful in light of your current needs. Thank you for all that you share. You are a gift.

Thank you so much for this very valuable information, Saul. All the best.

Thanks for the update. Continued best wishes.

Thanks for sharing this important information. I hope you'll be writing soon about your complete recovery!

"Give 'em hell, Saul!"

No gentle fight for you - and your fans are right here fighting alonside, albeit a little long distance.

What a wonderful article. And what a wonderful program. I thought I read, though, that the Medicare Hospice Program has been cut completely in the new health reform bill that Congress passed. Do you know anything about this?

One of the best written, most factual, personal articles on hospice. It will help hospices clear up misperceptions and undoubtedly will help many, many people get the best care they can receive in their final months or years. Thanks for a great article.

Excellent recap of hospice. Have encountered numerous patients through the years who have "graduated" as you say and continued to experience enjoyable lives. Given your positive attitude and spirit I would expect you to do the same. My best wishes to you. Keep writing!

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