MSI Press Blog

I have put off talking about this topic on Cancer Diary for a while because the memory is so painful. However, it did happen, and therefore it probably happens more often than one would think or hope. When it became time for Carl to go on hospice, we chose home hospice and looked forward to him being back home from the hospital with his family and having the support of professionals in our own.  Alas, that did not happen. Whatever could go wrong did go wrong -- and it would appear that with this particular hospice, it might have been regular practice rather than something going wrong. The easiest way to share is probably just to provide a list of everything that went wrong. (Any one of these might go wrong with any hospice, something caregivers should be prepared for. All of them going wrong is simply incompetence, uncaring, and abuse on the part of the hospice.) [In this list, Hospice C is the first hospice we worked with, the bad one, and Hospice B is the second one, the good one...

  Choosing hospice is choosing to die. That may sound like a stark statement, but it is, in my experience, a true one. Now, when confronted with cancer, one can choose to live at home, not receive treatment, and not be in hospice--at least, for most of the course of the disease. That is what my sister-in-law did. She chose to die naturally and not fight nature, in part because she had no insurance (and did not want to rack up major debt for her husband or jeopardize their life savings and house) and in as much part due to her religious beliefs. She did go on hospice during the last six weeks of her life; she needed medical attention, and the hospital, to which she was ambulanced, moved her to in-patient hospice as a compromise. She was placed in a very nice New Hampshire hospice, Hyder Family Hospice House , known simply as Hyder House. Not all hospices are this attentive, gentle with the family, well-appointed in interior ambience and amenities, or surrounded by such beautifu...

  I like to follow the blog of Barbara Karnes , hospice nurse par excellence. Much of what she has to say to hospice nurses about end-of-life issues in general apply to caregivers of cancer patients in particular. Her latest post, " For some doctors, it just isn’t in their tool kit to stop trying to treat,"  reflects our experience very well. Only when Carl fell and needed four people to lift him and get him to the hospital and x-rays showed complete take over by cancer of four major organs along with blood clots in his legs and lungs did the doctor suggest hospice (although he also expressed a willingness to continue treatment -- a different treatment -- if we wanted). We chose hospice, but the period of time was short. Carl returned from the hospital and went on hospice August 7. He died August 16. I have always wished that the doctor had put the hospice option in front of us much earlier, perhaps even at the beginning of the 5-month period during which the doctor tried eve...

When facing advanced cancer, one of the most profound decisions patients and families encounter is whether to continue aggressive treatment or transition to hospice care. This decision is deeply personal, influenced by medical circumstances, values, and personal preferences. Today, I'd like to explore the considerations that might guide this difficult choice. Continuing Active Treatment: When It May Be Right Potential benefits of continuing active treatment: New treatments and clinical trials may offer hope, particularly for cancers with emerging therapies Some aggressive treatments can extend life meaningfully for certain patients Continuing treatment aligns with the desire to "fight" that many patients feel For some, pursuing all possible options provides peace of mind that everything was tried Considerations to keep in mind: Treatment side effects may significantly impact quality of life Time spent in treatment and recovery means less time with loved ones Some ...

  Earlier, I wrote about the two paths that erupted in front us when faced with a late-stage cancer diagnosis: to focus on living or to focus on dying. There are so many problems and so much confusion when told after a fall or a blood test or something else that seems otherwise innocuous that your loved one has advanced stage 4 cancer.  The worst thing about a late-stage diagnosis is time, or the lack thereof. Not just the time left for a cancer victim to live, but the time available to make decisions.  The first decision--to treat or go on hospice --is a significant one, and there is often no time to really think in through. From my own experience with more than one relative diagnosed with more than one kind of cancer at an advanced stage, there is an automatic, nearly instinctive choice made, not a reasoned one. Got insurance? Treat the cancer. Don't have insurance? Don't treat the cancer. Those are clearly not the most logical or even medically best or viable criteria...

  I would be remiss if I did not follow-up on the story of the horrible hospice from hell . Once the complaint was raised by the California office to the federal level, months passed. I wondered if justice would be served. But I kept hearing that one or another person who had witnessed the inadequacies of the horrible hospice from hell were being interviewed. I also heard that the hospice was called in for interview and that a couple surprise visits were made by state staff.  After nine long months, I got a written response from the state. Wow! The hospice had to post that they were not meeting state requirements. They had a two-page long list of deficiencies to correct with a time frame for doing so and an oversight plan. I was not only satisfied, but I was also impressed with the efficacy of California's oversight. It could not bring Carl back; it could not undo the harm it had done to him; it could and likely would spare many others from the kind of trauma we had through. ...

  When Carl came home from the hospital and was put on in-home hospice, we, the members of his family (my daughter had come from the East Coast with her family and my son had come from Sacramento), did our best to learn all about his medical needs. The kids had come home because it was clear the end was near, and we wanted to make sure that his time at home was as pleasant as possible, surrounded by family. We learned about the various medications he had been taking and would be taking. He was not able to communicate well by then, but he had quite an arsenal of regular pills that he took every day, and once he stopped being able to sort them out himself, we had to figure out which he needed when. He was also given new drugs -- morphine, which he used only a little of, and an anti-anxiety drug, which he never needed. With the morphine, instructions were unclear, and we guessed at amounts. Checking in with the hospice nurse, we learned that we were giving a 300-pound man the dosage t...

photo: care.com When Carl was dying from Cancer of Unknown Primary , we were facing the question of how to handle his 24/7 needs for care. Everything was compressed during that time -- decisions had to be made without the time to reasonably research them and rationally make them. (That is the primary reason MSI Press established Carl's Cancer Compendium : to pull together a lot of the basic, time-consuming research that could be accessed with just a couple of clicks).  When we decided to try chemotherapy, he became not eligible for hospice care. IMHO, there is a problem with the binary system behind hospice availability. Decide to work on dying - hospice is available. Decide to work on living -- you're on your own. Yet, this is exactly the time that patients and their families need help; being on your own is certain to result in a range of emotions, including anger and frustration, as well as poorly informed decisions, burnout from family member who cannot do everything and be...

  The Hoyer lift made life work for us when Carl came home on hospice. I had been told about it by a friend after Carl had fallen several times and needed help getting up from more than one neighbor working together. Had I known a little earlier, I could have saved the neighbors some effort and Carl some dignity. Actually, once Carl went on hospice, the hospice company provided us with the lift. (Their aides would not have been able to lift Carl without it.) Having it at home meant that we could move Carl from bedroom to living room and back so that he could spend his days with his family out where they were and where he preferred to be. The Hoyer lift, as see in the picture is a tall pole with a moving base and patient sling for lifting patients who cannot stand. There are at least four  kinds of Hoyer lifts : power lift (highly recommended for large patients with small caregivers) manual (less expensive and works find for average-sized patients and average-sized caregivers)...