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Friday, July 27, 2012
Warfarin in end-stage heart failure- When does it end?
Some of you know that a lot of what I've learned about issues in advanced heart failure care has come from my everyday real-life experiences as a caregiver for various family members with HF. (see Facebook AAHFNPC for more details ). These experiences have been critical in shaping my understanding of patient and family issues, building on my practice experience, research, writing and study of this subject. Right now, we're going through the end-stage HF experience again with another dear family member who was enrolled in hospice today, and one of the issues I'm struggling to understand is how long should warfarin be continued in someone with end-stage heart failure.
Last weekend she fell, hitting the back of her head while brushing her teeth in the bathroom. She's on warfarin for a history of Afib, mostly controlled on amiodarone. This was not a good situation- an aunt of mine died from an intracranial bleed following this kind of fall a number of years ago, and she was not on anticoagulants, so I was pretty concerned. Thankfully, the head CT revealed no bleed. This time.
So my question is, when do we stop warfarin in end-stage HF? When does the risk of a hemorrhagic stroke or other bleeding event from the drug, outweigh the risk of a thrombotic stroke from the AF? It's so easy to put patients on warfarin, yet in my experience it seems almost impossible to get them off of this difficult and very widely used drug. I have a love-hate relationship with some meds including warfarin, amiodarone and metolazone- great at doing what they do, but oh so risky if not used with care, or if something unexpected happens.
I've asked her HF NP and cardiologist as well as her PCP numerous times over the last year whether she really needs warfarin due to the risk of bleeding with a fall- these concerns raised as we saw her functional status decline, and increasing unsteadiness, even when using a walker. Now she's fallen and I'm more concerned than ever. The PCP, while responsible for managing the warfarin dosing, passed any decisions about discontinuation off to the cardiologists. Her HF cardiologists wanted to pass it off to her electrophysiologist (who really is not involved in her care, and doesn't know her- just put the pacer in and put her on the amio for AF). Last time her pacer was interrogated, I asked the HF team cardiologist about this again. The MD decided to keep her on the warfarin as the pacer showed 4 episodes of tachycardia in the last 45 days, lasting 4-8 seconds each.
The issue of continuing or discontinuing high-risk/benefit meds such as warfarin in pts at the end of the HF trajectory is an important one for us to figure out. What does the evidence show is the best practice for our patients? If cardiologists and PCPs are passing the buck, maybe advanced practice cardiac nurses need to take the lead in finding and disseminating the best evidence to guide decisions about these drugs, then use it in advocating for our patients- and sometimes even our own family members.
How do we equip our patients and their caregivers to talk about difficult topics with their families? I know that in our family, all of us feel the need to know what's happening with our parents, and to be involved in the decisions that are made, as these decisions affect all of us.
When my husband and I were talking about getting hospice involved for a family member a few weeks ago, before we called hospice, we made sure that all of the siblings knew what we were considering, and that they had a chance to be involved and ask questions before anything was decided. He was also very concerned about how to have this difficult conversation so that it would not come as a shock to them. I shared with him how providers often determine hospice eligiblity, by asking themselves the question "Would I be surprised if this person died within the next 6 months?" Considering how sick she was during her admission and her deterioration over the last year, his siblings came to the same answer as we and her provider did- no we would not be surprised. and they agreed with the idea of getting hospice involved.
I think that involving families in the discussions with the patients and giving them tools to have these conversations with their loved ones is a critical piece of the communication piece that we may be missing, but that we should consider including. Can you imagine getting a call from your sibling who is the primary caregiver for your parent, and they drop this type of bombshell "Oh, by the way, Mom enrolled in hospice today", or "Dad had his defibrillator turned off yesterday." What would that feel like? How would that impact your relationships with your family members- perhaps long-term, and especially at a critical junction in the family history, when family members need to work together in supporting and providing care for their loved one.
So, the take home message?
Talk to patients early in the HF diagnosis about what to expect over the course of the diagnosis.
Include information about the unpredictability of the HF trajectory, functional decline with advancing disease and the likelihood of sudden death.
Encourage and assist with advanced care planning and document their specific wishes so that the entire team will easily find this info during an emergency.
Encourage them to talk with their families about what might happen, and to prepare financially, legally, etc, just in case something unexpected happens to them- often people are worried about not being a burden to their families, or what will happen to them when they are gone. Speak to these concerns as reasons for planning ahead.
Revisit these discussions at important turning points such as following a hospitalization, and when you see important prognostic indicators such as the development of frailty and recurrent decompensation episodes. Consider talking about it annually at routine visits for stable patients. so it becomes a normal thing that you talk about in your patient- provider relationships.
Individualize advance directives in accordance with patient preferences. Be as specific as necessary, including options about device deactivation, CPR, drugs, intubation, dialysis, etc., and whether they want these options when the cause of the problem is easily treated.
And finally, share with them the decision-making processes and tools that you use applied to their case, to help them understand, AND to give them the tools to have these discussions with their loved ones.