INTRODUCTION
METHODS
Design
Study Population and Setting
Data Collection and Variable Definitions
Patient Characteristics
Goals of Care
Category | Definition | Representative text |
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Comfort-focused | Patient’s goal is to maximize comfort and avoid suffering. Includes seeking interventions to promote comfort (e.g., pain control) and avoiding interventions that would increase discomfort, even at the expense of decreasing longevity | The patient is deciding to go home on hospice. In the event her heart were to stop, she does not want CPR. She additionally does not want to be intubated, placed on a ventilator or transferred to the MICU. Her wish is to go home |
The family was updated on the patient’s acute decompensation this morning…I explained what would happen her heart were to fail and we would need to code her. Both her sister and son expressed that they would want her to be comfortable and would not want her to go through the trauma of the code. At the bedside, we told the patient that her body is dying and we are reaching the ceiling of our life support medications. The patient said she feels God is calling her home. She affirmed that she does not want to be coded or intubated and gave permission to stop dialysis…She also requested to speak with a Chaplain. She expressed fear of death and pain and accepted pain medications | ||
The patient stated she did not want to continue and interested in transitioning to comfort care…I spoke with [the patient’s daughter] who was present at bedside today…I expressed what the patient communicated re: her own GOC to [daughter]. [Daughter] was emotionally upset about the discussion of end-of-life…She felt that removing life support is ‘murder or passive suicide.’ …I repeatedly expressed that no decisions need to be made but rather this was an opportunity to talk with everyone, including the patient who can express her own wishes. Throughout this conversation, the patient was nodding yes and confirming what she had expressed the other day re: her own GOC. She was able to mouth words to her daughter that she say she’s ready to transition | ||
Goals are palliative, plan for transition to in-patient hospice. Wife hoping to best honor patient’s wishes and provide a death that is dignified | ||
Maintain or improve function | Patient’s goal is to maintain or improve cognitive or physical functioning by undergoing medical care aimed at preventing or reversing dysfunction, even if that medical care would increase discomfort. However, care that would increase survival/longevity without preservation or improvement in function is generally avoided | Extensive discussion of the options, pros and cons of more aggressive therapy being the most important. Will continue to hold off any chemotherapy for now—his quality of life is getting slowly better and disease is not aggressive. In terms of goals of therapy, the most important would be a return to his level of functioning of two years ago |
Patient and I discussed her short-term goals of care. She says she would ideally like to return to work where she is a manager at an adult daycare center. She says she finds this work meaningful | ||
Patient’s wife said she is processing patient’s relatively new diagnosis and rapid decline. Patient had previously expressed to wife that he values quality of life, meaning functional independence. He does not want to suffer. Patient’s wife trying to balance honoring patient’s wishes with gathering all of the date from the team to support making decisions on his behalf. Wife also said patient would not want to be intubated or have CPR given the state of his current illness…Patient has previously expressed to [wife] that he wants to be functionally well and independent and values quality of life | ||
Patient understands that she can stop [chemotherapy] at any time. Goal is to help her feel better. If makes her feel worse, recommendation at that time would be for hospice. Patient is DNR/DNI and I signed out of hospital DNR form for her | ||
Life extension | Patient’s goal is to live as long as possible without limitations on care. Extending longevity or survival is prioritized over maximizing function or comfort | [Patient], [spouse] and I discussed what [patient]’s preference would be in the event of a life-threatening emergency or cardiac arrest. She tells me that she would like a ‘second chance’ at all costs and would want her medical team to exhaust all possible options, including performing resuscitation in the event of cardiac arrest |
We reviewed the options available to her regarding treatment of her lymphoma. She continues to want to pursue continued therapy, even if there is only a small chance of a temporary remission. [Oncologist] explained that if she were to improve enough from a pulmonary standpoint she would potentially be able to receive more therapy. I tried to elicit her values, and she tearfully expressed only a desire not to die. She expressed that her goal would be to be able to visit the beach and stand in the sand again | ||
‘I just want to get better.’ Daughter is concerned about improving her appetite so she can gain some weight…I want to spend the rest of my life with my children, grandchildren, and great grandchildren. My Longevity…I can probably adapt to anything….Anything necessary to prolong life including life support and ICU care. ‘Whatever is necessary, there is nothing I don’t want.’ | ||
Husband was updated. I also shared that I had not seen any significant neurologic recovery. He said ‘just do whatever you can to keep her alive’; not interested in discussing goals of care further |
Analyses
Statistical Analyses
Qualitative Assessment
RESULTS
Patient Cohort Characteristics
Documented Goals-of-Care Discussions
Categorization of Goals
Trajectory of Goals of Care over Time
Qualitative Analysis of Coder Disagreement and “Unclear” Goals
Theme and definition | Representative text |
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Multiple goals concurrently held or conditional Multiple goals are held concurrently that cross distinctions between the three categories; or the stated goals are linked to some conditional health state or circumstance | Patient tells me he feels very unwell on dialysis. But also that he wants to live. At this time he does not want dialysis, not today |
Patient would like to start TPN with goal of moving toward chemotherapy. Patient and I have had some conversations about her being in control of when to stop TPN, if side effects, limitations on mobility, etc. are intolerable to her…Patient says that she is moving forward with the decision for TPN with the hope that she will ultimately be able to receive chemotherapy. She reflected that she does not have answers about the microperforations, and will have to wait and see how these develop and how her body responds. Yesterday we had discussed that she might not want TPN if these things were not treatable, and we briefly reflect on that conversation by saying that if she ever wants to stop TPN, she is able to make that decision…Pain is tolerable today, and well balanced with mental clarity, per patient | |
Explicit or implicit uncertainty Subtheme from GOC discussions with unclear goals: patient/family explicitly expresses uncertainty as they await more information, more time, or an additional person’s input Subtheme from GOC discussions with inter-rater disagreement: patient/family express goals implicitly and require inference | Dr. and team called by this afternoon to discuss surgical options, expectations etc. Patient is with her husband and other family members in room. Wants some time to decide about her ultimate goals and how aggressive she wants to be with regard to palliation |
Held family meeting with patient’s children, grandchildren, nieces and nephews via conference call. Patient poor prognosis was discussed, as well as limited options for treatment. Family would like time (1–2 days) to discuss among themselves whether they would like to continue aggressive medical management or move to more comfort-oriented measures | |
Long discussion today with [the patient] and her daughter about continued progression of her cancer, causing significant morbidity and requiring multiple hospitalizations. We recommend best supportive care and aggressive management of her cancer-related symptoms. This would best be supported with hospice care…[The patient] desires a consultation to hear about in-home hospice care at this time. We reviewed that this would allow her to have symptoms managed at home without coming in to the ED or hospital. She is already DNR/DNI | |
Small cell lung cancer: Options include weekly paclitaxel or hospice. There is a low response rate to paclitaxel given his refractory disease. However his performance status is still adequate and he wants to try more chemo. I went over the risks, benefits and potential side effects with the patient in detail. The patient signed informed consent. Poor prognosis discussed with patient and wife. Likely months to live | |
Insufficient documentation Information documented is inadequate or too vague to provide insight into patient/family goals | # Goals of care – Patient previously on home hospice services + home health services – no longer on hospice and does not want to pursue this |