See you later, hospice

Not too long ago I suggested hospice to a patient who had progressive cancer, although she likely had months to live.  “I don’t think it is time,” she replied, “hospice is for morphine.”  “That is not how I see hospice,” I replied, “I think hospice is about getting the best care and support, even if there is no real treatment for the disease.  It is about living well, maybe better. Even hospice is not without hope.”  “I don’t understand,” she said.  So, I told her the story of Tom.

Eight years ago, Tom came under my care for bladder cancer.  The cancer had spread to the lymph nodes in the back of his abdomen, and there were a hundred pea-sized cancerous nodules in his lungs.  The cancer was incurable, but as bladder cancer often responds to chemotherapy, treatable.

After several discussions about goals and side effects, during which I assured Tom that the therapy would be well tolerated, we began chemotherapy.  He did terrible.

Tom developed an encyclopedia of complications. Not one or two, but practically every one.  Uncontrolled nausea and vomiting; Severe dehydration with kidney failure; Bone marrow failure requiring 12 transfusions; Fever, sepsis and shock; Progressive breathing failure from bacteria pneumonia; Breakdown of the tissues of his mouth and gut with life-threatening diarrhea.

Within 10 days of the first milligram of drug entering a vein in his left arm through a delicate butter-fly needle, this man, who had walked into my office feeling well, was on a respirator in an intensive care unit with tubes in every orifice, dialysis machine chugging way at bedside and his family trying to decide whether to “pull-the-plug.”

Despite our efforts to kill him, Tom survived.  By the time he left the hospital he had lost 30 pounds, was without any hair, had sores and deep purple bruises all over his skin, could not walk, was prone to moments of confusion and was on enough pills to stock the average pharmacy.  We suggested transferring him to a rehabilitation facility for physical therapy and continued treatment.  However, after long conversations, and at his strong request, we moved Tom home and called in hospice.

The minimal requirement for involvement in hospice is that a doctor must state that the expected survival of the patient is less than six months.  This was easy, as between growing cancer and the residual complications of his disastrous treatment, I knew Tom would be gone in less than 90 days.  He and his family accepted this reality and were thankful that he would be home and comfortable.  Therefore, while I planned to see him in the office as long as he was able, the plan was to support him at home until he died.

Hospice did its job.  Hospital bed in the dining room.  Commode nearby.  Trim down the laundry list of drugs to a few pills about comfort.  Pain controlled.  Out-of-bed each morning. Regular visits and support from nurses, aides, clergy, and an eccentric volunteer who insisted on serving herbal tea and reading the day’s newspaper, even when Tom just wanted to crawl inside.  Time passed. The cancer was not treated.  Tests no longer performed.  Just family, love, and a little hope.  Tom got better.

Three months into hospice terminal care, he walked into my office.  Tom had gained 15 pounds. He walked with a cane, but briskly without threat of fall. His hair had begun to grow back.  His skin was without wound. He was alert, stronger and comfortable.  He was back.

Tom and his family asked about prognosis and what the future held.  Without x-rays, it was impossible to measure the status of his cancer, but I reminded them that he still had incurable bladder cancer.  “Would treatment help?”  They inquired.  “Possibly,” I said, somewhat in shock that they would even ask that question.  “We’ve come a long way, so how do we find out?”

We did a CT scan of his chest and abdomen.  The cancer was still there, but had doubled in size since our disastrous attempt at therapy.

“What would happen if we tried to treat it again?  Could it be done safely?”

“Well, there is still the same chance as when we started that it would respond to treatment.”

And then, to my amazement and confusion, they said, Tom said, “We would like to try.”

The technical term is “revoking hospice.”  This means you drop out of the hospice program, and go back on active care, with medical insurance paying in the regular manner.  Insurance allows you to revoke as many times as you like, and then, if or when you wish, go back on hospice when you need it.  It is necessary to revoke hospice to receive chemotherapy.  Therefore, that is what Tom did.

When we resumed chemotherapy, we were very careful.  We completely avoided the particular drug that we believed caused his major complications.  We were very aggressive with extra intravenous hydration, medicine to stimulate his bone marrow and frequent visits.  We even admitted him to the hospital for one night, just because he had a single diarrhea-like bowel movement.  I called him every day.

Tom did perfectly.  He had no significant side effects.  He gained strength, weight and mobility, even while he was on treatment.  He never had a fever, breathing problem, or vomiting, and his kidneys functioned fine.  Moreover, while he did lose his hair, he lost something else.  His cancer melted away.

By five months into this new chemo, Tom’s CT scan showed no active disease.  A complete remission.  While we all knew this was not a cure, that the disease would eventually come back, Tom and his family were elated.  He was able to stop therapy and get back to his life.

Tom survived another four years.  His cancer did come back. Two more times we controlled it with chemotherapy.  He traveled, attended weddings, and watched his grandchildren grow.  In the end, when the disease took over, he went back on hospice, with the same group that had saved him years earlier.  They took wonderful care of him and his family until the day, at home, back in the dining room, with the sun radiating through lace curtained windows, a noisy 18 month-old running around the room, he died.

Tom was healed by hospice.  He showed that hospice is about living, not dying.  The end-of-life is about being alive, not being dead.  With proper care, proper support, and love, we can share the miracle that is life.  What more can any of us wish, then that?



  • Paula Kaplan-Reiss
    Whew! What a story!
  • Thank you so much for this powerful endorsement of both the beauty and utility of expert hospice end-of-life care. I have to say, however, that the message here seems strikingly different than this earlier post of yours - - in which you seemed to refuse referring a patient to hospice due to your puzzling reluctance to be out of the daily care loop. I hope patients and family members who are struggling with the hospice timing decision will read today's compelling post instead of that one. regards, C.
  • This is very positive and convincing in so many ways. But surely you know it leaves at least one of your fans wondering what the chances are of Bc survivors later getting that horrible chemo that he got?
  • meyati
    This makes me happy-but this is because a quality patient and family had quality care and a doctor that listened.
  • A member of my metastatic breast cancer support group began hospice care yesterday. This is always kind of a jolt for the rest of us, but we do also have a couple of members for whom hospice was revoked. I am so glad that good palliative care and end of life care options are available for so many people.
  • Beautiful people much hope love and care for a terminally ill person... Hats off...
  • me
    Our first meeting with Hospice was tentative to say the least My wife had suffered from breast bone cancer for four years undergoing various chemos and treatments. We both assumed Hospice was the end for my wife and were not sure what they would do for us. At the start my wife was given 1 1/2 months to live. The first visit by a Hospice nurse went well as did the meeting with a social worker. My wife was home and I was taking care of her needs. A conference with the Hospice nurse resulted in agreeing to have a home health aide come in 2 hours a day Mon thru Fri. The primary reason for this was to give me a chance to take a break, do shopping and get to the gym Shortly after the first nurse's visit we received a package of pain relieving meds including morphine. We never used them.. As time passed she started to decline and we were able to obtain medical equipment such as bed rails, walkers, wheelchair, etc The aide did some laundry, massaged my wife's legs and talked to her while I 'recharged' at the gym. Each 2 weeks the nurse returned and interviewed my wife and I. Based on that interview she decided if a change in plan was needed. Approximately 5 months on she took a turn for the worse. The case nurse ordered a 24 hour nurse coverage. She passed away peacefully after one night.while I was at her bedside. I am pleased that she was home for these 5 months where she could enjoy visits from our children and grandchildren. During this time she celebrated a birthday, Thanksgiving, Christmas and New Years. As I think of the experience now I understand now that Hospice provided her with a dignified death at home surrounded by family.
  • D Someya Reed
    Why on earth would you claim that hospice “healed” Tom when you know that hospice “healed” him no more than did you or I? All hospice did was remove the toxicity load that Tom was placed on and allowed his (strong enough) body to recover…many bodies don’t. You say yourself that the hospice placed him on drugs only needed for comfort care which is actually a big complaint about hospice. Hospice removes life-sustaining drugs for two reasons: 1) it’s not hospice standard of care and 2) it’s a cost-cutting measure for Medicare and insurers (and doesn’t hurt the hospice’s bottom line either). As healers, you even have hospice breaking its own most basic tenet of “hospice is comfort-oriented care that neither prolongs life nor hastens death, but allows the illness to take its natural course.” If “healing” anything, your claim of “hospice healing” then is nothing more than an accidental by-product or it becomes a violation of Medicare’s Conditions of Participation. But that doesn’t make the same kind of marketable, promotional, uplifting story that you told, does it? You do a disservice to the public by promoting hospice in this way without including anything about the potential downsides of hospice where total strangers come in to your home without fear of any reprisal (because none exist…no fines, no nothing) for anything they might do. The only remedy CMS has for hospice is to remove their ability to bill Medicare. That rarely happens and nothing prevents the same hospice from reconstituting itself elsewhere under another name. People need to understand how to find a good hospice and the best one with the best people for themselves and their own individual situation. You do none of this and promote using any old hospice because they are all wonderful and would never consider harming either a patient or family member. Do you say the same for choosing an oncologist? Just pick one from the yellow pages or off the Internet. There all the same, all the same skill levels, all subscribe to the same Hippocratic Oath and would never do anything improper towards a patient. I cannot believe that “the Kool-Aid” is so strong as to remove all common sense and all scientific facts. You adore all hospices yet routinely denigrate doctors both individually and as a group. Why?

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