It is my privilege to bring to you the next edition of Conquering the Cancer Care Continuum series. This issue, which focuses specifically on hospice options, is one I believe to be vitally important to read. Hopefully, concepts addressed here will be adopted as new and better ways of supporting our terminally ill cancer patients and their families.
I recall several years ago getting an e-mail from a man named Bill. He had found me via the Internet and wrote to me stating that his young wife, Mary, had metastatic breast cancer that had progressed to her liver, lungs, bone, and now brain. She was currently in the hospital and sleeping more than she was awake, confused at times, losing weight, but “had still been receiving chemotherapy until yesterday.” He wrote that the doctor who had taken care of her for the last 4 years had asked him to come and meet him this morning in her room to talk about next steps. He said that usually the oncologist would linger for a while whenever these types of discussions were taking place, but this time he was very brief. The doctor said that treatments were no longer working, so he was “going to put my wife on hospizz.” The husband then went on to write, “I found the drug Herceptin but I can’t find the drug Hospizz. Can you tell me anything about how effective this drug is for brain, liver, and lung mets?”
My heart sank. I wrote him back asking him to call me. He did soon after that and said how surprised he was for me to respond at all and to even request that we talk by phone. I reiterated all of the information he had told me about the long journey he and his wife had endured together since her initial diagnosis at age 30. Based on his description of her clinical condition and limited alertness, it was evident that she was gravely ill. I told him that I thought the doctor was so distressed himself that he found it difficult to linger after his brief conversation regarding this next step for Mary. And that what he is now placing her on is not a drug but a special program called hospice. (He had not heard this term before either.) As I began to explain some of the key benefits of hospice care, he got very upset and said, “Lillie, my wife cannot die. We have 2 sons, 6 and 8 years old. I cannot raise them alone.” I then told him that she would die but that hospice staff and I would work with him to prepare these children for losing their mom and help him identify family members and friends who would help him raise these boys. I emphasized the importance of getting all the ducks in a row now – advance directive, will, power of attorney, etc. Though he was obviously overwhelmed, he realized that this did have to happen very soon. Though she died just 5 days later, the hospice experience was a positive one. It was not the Grim Reaper coming to their door. It was a philosophy of dying with dignity, having your wishes known and carried out, getting closer with family, and preparing family for moving forward after she was gone.
What was unfortunate, however, was the brief time they had to truly benefit from hospice care and services. Mary as well as her family could have gained more benefit and probably experienced better quality of life at end of life had chemotherapy not still been infused into her weekly during the last 3 months of her life, while the doctors watched her scans show consistently progressing growth of the tumors everywhere.
It also worries me that if Bill hadn’t “found me” on the Internet, how much more time would have been lost in getting Mary the palliative care she needed and getting the emotional support he and their young sons needed.
After Mary died, Bill called me to thank me for my help. He had done as I had asked, which was to get cards for the boys’ birthdays, communion, high school graduation, marriage, and when they have their own first-born child so that he could help Mary record (or record on her behalf) what she wanted to tell them on each milestone day. In doing so, Mary would still be there instilling her values in her children and being an active part of their lives as they grow into adulthood.
We need to have more thoughtful discussions with our patients and not equate hospice care to throwing in the towel, giving up, bringing the Grim Reaper to stand at the foot of the patient’s bed. Some of the best weeks and months of truly “living” can be achieved for the patient by engaging hospice care sooner rather than later. If I had a nickel for every time a family said to me, “I wish we had learned about hospice sooner,” I could likely retire early.
So read these case studies and see how they apply to your patient population. Treatment for treatment’s sake is bad medicine. Supporting patients so that their pain is controlled and their wishes carried out, while providing them quality-of-life time spent with those they love and helping them experience a peaceful death, is far better medical care.