There is a great post “A Rant on Terminology” at the GeriPal blog (link below). The post from the authors list some of their least favorite terminology used in the Palliative Care field. This hit a chord with a lot of people including myself. There are 23 responses and the comments are great. There were different comments about how we say things such as “Allow Natural Death,” “Heroic Measures,” “Lost the battle with cancer” etc. It got me thinking in how I talk to patients. In my comments I stated …”I think that the words we use are dependent on the person giving them (training, experience, mentorship etc.). I find that we can say most anything as long as you are sincere and compassionate. Patients and families pick up on your “heart” language more than what “exact” words you actually use…” For several weeks I had a medical student shadowing me and we went in to see a consult for pain. This patient was labeled as a “drug seeker” because she was requesting her pain medication every 2 hours on the dot. She had a history of rectal cancer and was >1 week post op without improvement of her pain. The nurses were concerned because she looked “comfortable” but continued to request the pain medication. After reviewing the chart and talking with the patient it was evident that the patient had a history of depression and psychosocial issues that went beyond our scope of practice. It was clear that she was using the pain medication to treat her depression/psychosocial issues. I sat next to her and I was genuinely concerned about her as I did my consultation. I spoke sincerely and directly to her and pointed out that she was self-medicating to mask her problems. She actually agreed with me and stated that she needed help. The patient knew I was speaking from my heart and therefore my “Heart Language” was loud and clear. The lesson that day for the medical student was that we need not be so concerned about the exact words or phrases we use but how we say the words and what body language we are portraying. If we show that we really care, this will be louder and clearer than anything we can say.
This blog entry is a continuation of the entry “Difficult Discussions are More Difficult When You Can’t Have Them.” On my previous post I talked about Tom and I finished with “may he rest in peace.” Actually I wrote that because I didn’t think I was going to write about him anymore. Well, Mr. Tom actually died this morning before I could make it to the hospital. As previously stated, he was started on comfort measures and he continued to decline through the weekend. I finally started to round at about 10am and made it to the unit. He was transferred to a new floor overnight and I looked on the board to see which room he was in. After I located his name and said it under my breath, a voice from behind me stated “he died.” Really, I just got a phone call a few hours earlier stating he transferred to this unit. “He died at 0720,” stated the nurse. I always return with the same question hoping I hear the right answer. “Was he comfortable?” I asked, “Yes”…exhale, right answer! I asked if his body was still present and they told me he was still in his room. As I stood over his pale body, I reflected on how peaceful he looked compared to what he looked like in the ICU on the day of my initial consult. My thoughts went to his niece who decided to make the difficult decision to be his advocate. I stood for several minutes in silent reserve, said a prayer and left. May Tom rest in peace.
The Good Death Blog has a great post on the Betsy McCaughey Daily Show Appearance with links to the actual Daily Show clips. I’m impressed with Jon Stewart because he really presses her hard and he really knows his stuff. You can actually tell that he has read the provisions of the New Bill, which I think she was totally not expecting. I think she thought she was going to appear on the show, present her interpretation of the bill (which is negative of course) and cruise right off. Well she was wrong and you can see how she stumbles across her words and becomes discombobulated as he presses her. A must watch!!!
I’m writing this several days after an initially frustrating palliative care consult. Just as the talks have been heating up about “death panels,” and what the new legislation may mean, I sat in the ICU staring at Tom, through the ICU window that separates us. He was struggling with every breath while on the maximum amount of oxygen possible without being intubated. The problem is that Tom is an 89 year old man who has advancing Parkinson’s Dementia and he can no longer make decisions for himself. He has no wife because he was never married and he has no children. He only has a niece that hasn’t seen him for more than 5 years and the last thing she heard him say was that he didn’t want his life prolonged by artificial means. Prior to entering the hospital the patient was residing at a nursing home and he developed respiratory distress due to his worsening congestive heart failure. The niece was being contacted by telephone and didn’t want to be responsible for any decisions for this patient. The day prior she reluctantly gave a DNR order so that he wouldn’t be resuscitated. The doctors and nurses were confused as what to do next for the patient. The attending physician felt comfort measures were appropriate but was reluctant to initiate them because there was no guidance as what to do next. The patient had severe anemia and needed a transfusion, he also was not eating and was only being given IV fluids. The question was whether to place a gastric tube for artificial feeding. Going back to my initial statement, I sat there and thought how different and less confusing this situation would be if Tom would have had the chance to sit down and have an advanced care planning discussion with his doctor. Too bad he didn’t have conversations about goals for his life and how he would want to live the remaining portion including what he would want at the end of life. I sat there with my heart going out to Tom thinking he may undergo many things during this hospitalization that he may have been horrified by only 5 years earlier. Luckily, after gentle urging on my part to come and see the patient, the niece decided to come and see the patient. I received a call that she was coming to visit in 15 minutes. I got to the ICU to see the niece and her husband visiting with the patient. It appeared that they were uncomfortable in the room seeing him in his condition and realizing the gravity of the situation. I doubt they could hardly be there 5 more minutes seeing the patient in his condition and they seemed relieved to leave the room. We had a discussion in a conference room and after answering all of their questions, the niece decided to assist with decisions since she did have a brief discussion with the patient 5 years earlier. After seeing him in this condition she didn’t feel he would want to continue prolonging his life in this condition. She felt that comfort measures were appropriate and I subsequently wrote the orders. How many Tom’s are out there? How many geriatric patients still don’t have advanced directives or their wishes stated on paper? How many patients will suffer because difficult decisions haven’t been made ahead of time? May Tom rest in peace!
There is a great booklet about the dying experience that we use in our hospice for families. The booklet is called “Gone From My Sight,” and it’s helped many families through these difficult and unknowing times. I have had 100% positive feedback. There is a great poem at the end that I always like to go back to from time to time.
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says: “There, she is gone!”
Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port.
Her diminished size is in me, not in her. And just at the moment when someone at my side says: “There, she is gone!” there are other eyes watching her coming, and other voices ready to take up the glad shout: “Here she comes!”
And that is dying.
-Henry Van Dyke
This post originated from the comment section of my blog entry “Letting the Doctor Off the Hook.” I got some offline comments and good discussion so I decided to retool my comment and post it as a blog entry. The question I started to ask after I finished my fellowship and started working in the real world is why do patients continue to get chemotherapy when it is clear that they are no longer benefiting from it or their time is very limited? One response is that it is solely financial, but I know some of these oncologists on a personal level and that is not the sole driving force. I would argue that the main reason is because the oncologists have a hard time with difficult discussions. The rest of the entry is from my comment.
“There are many patients that would benefit from hospice if referred sooner and many times I have questioned why oncologists either don’t refer to hospice at all or refer several days prior to death. There are 4 main reasons that I have observed (I’m sure there are more). 1) They have to have the difficult conversation and address that the current treatment is not working and discuss alternatives such as hospice. This is difficult for them since it is very uncomfortable as physicians to squash the “hope” of patients (as perceived by the oncologist ) and discuss “bad news.” 2) By admitting to number 1 and having the discussion, they are admitting to their “failure.” I’m not sure what they were thinking when they decided to be oncologists, but 100% of their patients will die at some point or another. They are literally experts in prolonging death (I’m not saying this sarcastically, many cancers will now be looked at as chronic illnesses as prognosis lengthens due to new chemo medications that will prolong life). I’ve seen oncologists want to continue with treatment even though the patient and family were adamant that they were done with treatment. I’ve seen the oncologist have a hard time letting go. 3) So we ask them to have to the “difficult discussion,” feel like a “failure” then on top of that they lose a customer. Financially this is definitely not an incentive to have a heart to heart with a patient. The truly great oncologists do not allow the financial aspect of their job to influence whether or not they will start, continue or stop treatment. They base their treatment options solely on what’s best for the patient. 4) They have a difficult time realizing that their patients are dying. Even though they are surrounded by dying patients in their practice and the hospital, they do not practice hospice nor is hospice and palliative care a part of their training. I have seen many patients in the hospital receive chemo while they were actively dying and I’ve counseled many nurses that felt guilty about giving chemo to these patients. To summarize, there are many reasons why people will continue to get chemo, but just like I hate being pigeon holed as the physician that wants to put everyone on hospice, I’d hate to pigeon hole every oncologist as non-caring and money hungry.”
Last week I was called to do a palliative care consult for a gentleman named Mr. Daniel Faraday (not real name) with End Stage COPD. I was to meet with the Brother, Michael Fraday, and the Niece (the patient didn’t have decision making capacity) to discuss the patients current condition and discuss the Goals of Care. Daniel had been intubated early in this hospitalization and the family was able to witness his “suffering” while on the ventilator. They didn’t want to put him through this again since it seemed that he was continuing to decline again and he was a full code (means that a “Code Blue” would be called to initiate full resuscitative measures…intubation, chest compressions, medications etc.). This situation was actually bitter sweet for Michael because Daniel had lost contact with Michael for the last 12 years. Daniel may have spent time being homeless and the circumstance surrounding this is unclear. Michael was found by the social worker only during this hospitalization and only during this hospitalization has he reconnected with Daniel. Although on the surface this appears to be unfortunate and sad, I thought about what would have happened had Michael not been found. Since Daniel is nearing End-of-Life he may have died without Michael finding him or knowing what happened to his brother. Michael himself would have continued to wonder about his brother for the rest of his life. So even though the information that was given to him was somber, Michael seemed to decide to make the best of whatever time he had left with his brother and this encounter and experience would provide closure in his life. I know that one never “closes” those memories after a loved one dies, but I think in this situation the closure is having found his brother and in turn finding the missing piece and completing the puzzle of life. Their story reminds me about how easy it is to take life and family for granted.