CAPC Palliative Care Discussion Forum
General Operational Topics
I have a 55 year old patient on my palliative care outpatient service with metastatic squamous cell CA throughout her mediastinum,neck and cervical spine who in November 2008 underwent extensive debulking & hardware stabilization of her C-spine due to tumor and infection at UCSF in SanFrancisco. I don't think she ever saw the palliative care team there because somehow the family got the idea this was going to "fix" things for several years! She did undergo a brief trial of chemo, which ended when she came in in septic shock and respiratory failure about a month ago to out local hospital. She was ventilated and had laryngoscopy that showed extensive edema and narrowing of her trachea consistent with further tumor progression. She did stabilize on the vent with an initial plan to get her home on vent and remove it at home so she could die at home. However, family and the still alert patient wanted to try home ventilation. Some crazy physician (me!) set this up and got her back home on the vent. UNFORTUNATELY, the DNR(beyond ventilation) set up in the hospital was subsequently revoked by the patient/family and I now have a deteriorating patient at home with my nursing staff freaking out that she could code soon and they might have to initiate CPR on her. I don't feel we are mandated to do CPR in that it is futile and could cause great harm and suffering. The problem is the legality of the situation and whether my staff might be at risk for reprimand or loss of licensure for not performing CPR as per family request. We are setting up a Bioethics Meeting which I am not sure the family will be able to attend or not but I wanted to send this note even before the meeting to get more feedback.
Thank you for reading this lengthy note and ANY responses that come forth. I realize there are a lot of issues about unrealistic goals of care and setting up this whole misadventure by allowing the patient to go home on the vent. I was really hoping the patient and family would come around further with a little more time but it hasn't happened. Instead they're holding on tighter and tighter.
IMPORTANT: In order to post a new message or reply to an existing post in the discussion you must
login. If you are not a registered member you may
join here.
The statements posted in the forum section of capc.org are opinions expressed by website visitors and do not necessarily represent the viewpoints or positions of the Center to Advance Palliative Care(CAPC). CAPC is not responsible for the factual or legal accuracy of any of the statements posted.
General questions about using the
CAPCconnect™ palliative care discussion forum?
Email:
Jennifer.Raiten@mssm.edu
Lost login username/password questions? Email:
Margaret.Schutz@mssm.edu
Futile Care and CPR
Two questions to consider:
One questions is "Is an appropriate surrogate acting appropriately on the patient's behalf?" It sounds like the patient is no longer able to make decisions. Is there an appropriate surrogate acting according to the patient's wishes? When the DNR was revoked, was this the patient's wish or was a surrogate making that decision. If so, that original revocation of a competent patient DNR order by a surrogate not acting according to the patient wishes may be the relevant ethical issue.
If the patient desired for the DNR order to be revoked (and the change in goals of having her die at home), that is a different issue.
Second, "Was there an agreement implied by the establishment of home ventilator to resuscitate the patient?" There is nothing about providing a ventilator at home or in the hospital that binds the clinical team to also providing resuscitation (CPR and shocks).
The ethics and legality of unilateral DNR orders are fairly well-established. Futility in a strict sense is that the patient is already dying on maximal medical treatment and resuscitation would only lead to bringing her back to that dying state. For example, someone with multi-organ failure and sepsis already progressively hypotensive on triple pressors, antibiotics, vent, dialysis, etc.
So, the issue of unilateral DNRs in the strict sense is really a clinical one (not so much an ethical one). If she codes because she is dying irreversibly from her disease (progressive cancer) in the setting of maximal medical treatment, a DNR order makes sense (it would be futile to add chest compressions and shocks). Are there interventions (at home or in the hospital) that could reverse her "deteriorating" state? Is she infected, is she having renal failure? etc. If there an no treatments to reverse her deterioration, because she is, in fact, dying of end-stage cancer, unilateral DNR would seem appropriate.
Statically, in the setting of end-stage cancer, she is very unlikely to survive a code. Some define "quantitative" futulity as a chance of immediate survival less than 1%. She seems to have beaten the odds before.
If there are treatments to stabilize her or improve her situation clinically, the issue is less clear as it becomes one of "qualitative" futility... would resuscitation lead to a life worth living or life that might last for a particular amount of time. This is difficult for anyone but the patient (or appropriate surrogate) to decide, although physicians and hospitals do make these decisions too (and society might make these public policy decisions... although our society hasn't yet dealt with this). The patient or surrogates generally get to decide whether a particular quality of life is worth pursuing (for instance, life in a persistent vegetative state).
In the end, it becomes a question of meeting with the surrogates/family to agree on what the goals of care are. Clinically, you can then figure out whether it is possible with various medical interventions to achieve those goals.
For instance, lots was done with the goal of getting her to die at home. Ethically, people are allowed to change their minds (e.g. making different decisions after a therapeutic trial of some intervention).
I think you've been doing right by her all along so please understand that it sounds like you are doing the best you can in a difficult situation.
Of course, getting the ethics committee involved is key.
Obviously, there are many perspectives on this and it would be great to have others weigh in.
Best,
mike
Michael W. Rabow, MD
Associate Director, UCSF PCLC
I've been involved in several cases like this and when all parties are brought to the table, family along with the ethics team, the results are often astonishing. One other point may be to have the palliative care doctor talk with the patient and family about their goals of treatment. In these conversations it is really essential to be a good listener and not to enter with preconceived opinions.