Great article by blogger Ann Brasco (Twitter @annbrasco). A powerful paragraph in her entry which stood out to me reads, “Maybe its about less doing and more just being present. In a world that pushes us to fix, cure, act and immediately alleviate, the value of just being present is often overlooked.” Early in my Family Medicine career and while contemplating doing a fellowship in Hospice and Pallative Medicine a chaplain took me on a visit and taught me the value of just being “present.” Sometimes two souls sharing the same space, the same air, the same warmth is more meaningful than we’ll ever know.
There I was in ICU rounds (the Palliative Care Team attends ICU rounds) shaking my head as usual. One of my nurse practioner students told me she disliked going to ICU rounds because it was like a “Nursing Home.” She was saddened to see so many geriatric patients, in the ICU, mostly with a poor overall prognosis. The words “Trach and Peg,” ran through my mind for hours after rounds because so many patients were being “Trached and Pegged.” Those words brought so many negative emotions and feelings; sadness, fear, isolation, pain and suffering to name a few. The words and images burned into my mind, that for the rest of the day it was like a song that haunted me…”Trach and Peg, Trach and Peg.” The words bothered me to the point that I had to write the following:
“Trach and PEG”
“Trach and PEG”
Those words sound horrible in my ears.
Unknowing to families an artificial prison for months or years.
The family will never know what to expect.
Bedsores, UTI’s, pneumonias, you name it, continue to occur even without neglect.
Most families doing the best they can,
thinking that this is the best plan.
While I make rounds in the ICU
will the patient suffer through another code blue?
“Trach and PEG”
“Trach and PEG”
There are many times after a family meeting when I have to take a deep breath and remember that I’m leaving this patient and family and going home to my family. I’m sure we all feel at times that families make decisions for their loved ones that we don’t agree with as palliative care professionals. I have to remind myself that families I often meet with will make decisions that they will live with the rest of their lives. In the future I may remember this patient or that situation but my personal life most likely will not be affected by the decisions of others. This is the reason at times we have to take a deep breath, take a step back and let others live their lives as they see fit. I decided to write this because I most recently did a palliative care consult for an unfortunate male in the ICU. The patient has a history of CHF, liver cirrhosis, renal failure and a long list of other problems. He recently began to physically decline with decreased appetite, weight loss, decreased mentation, hypotension and hypoxia. After several discussions with the physicians, the wife did make him a DNR with pressors since he was already on pressors. He currently has a poor prognosis and all physicians including consultants are documenting “poor prognosis.” Knowing that this patient will get worse during this hospitalization, we held a family meeting to discuss the “Goals of Care.” To make a long story short, the wife decided that she wanted everything done, short of CPR and intubation, because when he dies she wanted to make sure that “I did everything.” We tried to reassure her that when a patient is dying MANY THINGS CAN BE DONE to assure that he is comfortable. We also tried to reassure her that there are ways she can be involved at the bedside while he is dying. Despite our explanations of possible discomfort at the end-of-life with continued agressive treatment, and despite our explanations that continued aggressive treatments would serve only to prolong the moment of death, she continued to voice that she wanted “everything.” Unfortunately we see this quite often as the role of medical decisions and expertise has been given to the families by the physicians. Physicians often say they don’t want to be sued and therefore will present the family with a menu of options and the families can pick and choose what they want. This is why we will see an order such as “Yes CPR, No Intubation,” or “Yes ACLS drugs, No CPR.” Often times the nurses will see me take a deep breath as I walk out of the ICU while shaking my head. I then remind myself that people have to live with their decisions in the context of their culture, religion and understanding of life. I may not agree with it, but I have to remind myself that it’s not my life. I then smile as I drive home knowing that my family is waiting for me at home.
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 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.
Hi all, great article in the LA Times. I printed a few paragraphs but the link to the full article is below. Below sums up what most of us in the Palliative Care field already know. When patients are told the truth and able to have a frank discussion about their disease and prognosis, even though it stings at first, they are then able to take care of business which can be financial as well as social. The patient in this article was able to reconnect with 2 sons he hadn’t spoken to in 12 years. I hope more physicians realize the importance of these discussions for their patients.
“Our family’s end-of-life discussion was excruciating. At first, Dad didn’t want to admit he was dying because he was fighting the cancer as hard as he could. He had withstood three grueling weeks of radiation so he could get better, but it wasn’t working.
Verbalizing it — acknowledging out loud that he was dying — was the hardest thing for our family to do. Dad’s physician helped us discuss the hospice option with him. The doctor came to Dad’s room and told him, man to man, that guys in his condition were considered terminal. The doctor told him in the way Dad liked to get information: straight up, with little show of emotion.
What families don’t know is that once this fact is discussed and accepted, everyone can move on. All the pretense of trying to get better is gone. We helped Dad get his earthly affairs in order. Two of my siblings hadn’t spoken to Dad for 12 years. When they found out he was in hospice, they came to see him. They wouldn’t have been able to do that if he had continued the radiation and died in the hospital.”