What is it that I do? Or – What is an Advanced Heart Failure (AHF) or Stage D Consultation?

People sometimes ask what I do. This story is from a recent patient interaction and should give you a good idea of my professional calling, career and passion.

My first patient of the day was a new advanced heart failure consult. He was referred by one of my cardiology colleagues. He has a severe cardiomyopathy (weakness of his heart). Recently he was hospitalized for heart failure (short of breath and swelling due to fluid retention from his weak heart.) His cardiologist recognized high risk features and he was sent to me for an AHF (heart failure stage D) consult.

He got very short of breath and was found to be in heart failure about 7 years ago. He tried to do what the doctors told him. He would feel better at times but then would have times when he would get short of breath again and they would put him back in the hospital. He has had ups and downs since that time. Before his visit I read through his chart. He has been on good therapy. His medicines include Coreg (carvedilol), Entresto (valsartan/sacubitril), and diuretics. When he was first diagnosed they did a cardiac cath and his coronary arteries were without blockages. Recently he had a nuclear stress test which was normal. He has had a defibrillator implanted. His electrocardiogram didn’t show any electrical delays (QRS was narrow). I didn’t see any obvious targets to improve the weakness of his heart.

He has a lot of high-risk indicators (we call them stage D indicators). These are things that can suggest a likelihood for problems in the near future. They are the markers of an adverse trajectory – or in other words – that the road ahead for him does not look good. Patients with stage D indicators commonly end up in and out of the hospital and then they die.

When Sarah and I go to drive somewhere we always look at the traffic apps on our phone. We generally use INRIX or Waze. Recognizing stage D indicators is like looking at your traffic app on your phone. You see that there is an accident ahead and the traffic is stopped. Sometimes you can get hints like seeing brake lights or traffic getting thick. If you can – you will quickly look to see if there is a different path you can take.

John (not his real name) has had recurrent hospitalizations for heart failure. His diuretic (water pill) dose is going up and he is now on a high dose. With this his kidney function is worsening. His sodium is also a little bit low. He also has lost his appetite and is losing weight. He is not trying to lose weight. Just like the “Waze” traffic app sounding an alarm about a hazard in the road ahead, his history was sounding alarms to me.

The notes indicated that he was still active, working with his horses. John loves horses. He has worked with them all of his life. I asked him how he was doing. He said he was doing ok. He was still able to work on his farm.

I pushed for more details. I talked through specific things that he was or was not able to do. As I pushed a better picture was revealed.

He is a farrier (he shoes horses). He used to be able to shoe 2-3 horses per day. Now he can only do about 2 shoes (1/2 horse) per day. He has to stop frequently to rest and to keep from getting short of breath. He will get half of the horse done in one day and come back the next day to finish the other 2 shoes. He is happy that he can still do it but is quite limited compared to 1-2 years ago.

We talked some more. I asked more details about his ability to walk, carry objects, climb stairs, etc… I used specific details and with that a clearer picture came out of his functional limitations.

It was clear to me from looking at his chart and examining him that he was declining. He has advanced heart failure. We describe this as “Stage D.” He is 73 years old which is beyond the usual age limits for a heart transplant. He would feel better with a ventricular assist device. He would live longer with a left ventricular assist device (LVAD). Our data suggests a good 4-5-year survival with improved quality of life with an LVAD.

Is that the right path for him? We had more talking to do.

From reviewing his chart, I knew that this decision was going to be complicated. Four years ago, he was not doing well. The topic of LVAD came up then. He stopped coming to appointments. Our social worker called him to figure things out. Were there “social determinants of heath” that were barriers for him? Her note made it clear that he had limited resources. Getting to appointments was hard for him (the AHF clinic is a city away). More than this – he didn’t like the idea of an LVAD. He had shifted back to his primary cardiologist at that time. He was coming to see me now that I was coming to his city (outreach clinic).

We talked about LVAD. We talked about the pros and cons. We talked about what it could do for him and how he could feel better and live longer. We also talked about what he would need to do to take care of it.

He shifted the topic to his horses. He was changing the subject.

As we talked more it became clear to me that he had no interest in an LVAD.

I asked him directly if that was what was going on. He smiled and told me, “Yes.” He made it clear that he understood everything that I was saying. He knew what advantages an LVAD would have for him. He knew he could live longer with it. But he was clear that he did not want it.

“Doctor, my father lived to 65 and died from his heart. I figure that I have done better than him. I am not afraid to die. I want to live simply. I want to live my way even if it means that I am going to die soon. To be honest, I have been selling my horses and getting things ready because I know that this is coming.”

We were now only halfway through the work that we needed to do.

We had established that he was stage D and that we did not have obvious targets for therapy. We had gone through a very clear discussion about advanced therapies (LVAD) and he didn’t want it. Next was advanced care planning – or perhaps better termed “shared decision making in medical illness.” These are some specific questions that we walk through with patients to understand what it is important to them so that we can tailor how we take care of them to meet their goals.

We discussed that we are all going to die. We laughed together at how obvious that is but it was reassuring to him to demystify the discussion by starting that way. We discussed that he is likely to die of his heart failure. We talked about the uncertainty of timing and that we have no idea when he will die. We talked about our impression that it is not “if” or even “when” but “how.”

Knowing that he will die of his advanced heart failure how does he want this to happen?

We reviewed the options again: (1) LVAD, (2) Standard care (medical care with recurrent hospitalizations until death), and (3) Hospital avoidance.

Hospital avoidance. What does that mean? It is a term that I am using that encompasses a broad array of solutions to manage patients. It can include frequent clinic visits, home care, home based primary care, special programs such as paramedic services that visit the patient at home, and eventually hospice. The goal is the best care that we can deliver but stopping short of admitting him to the hospital.

Why is this important? Hospitalization for heart failure is commonly a toxic event. Patients are treated aggressively. This is a huge neurohormonal strain on the heart. On top of that they are hit with a triad of impaired sleep, reduced mobility and frequent NPO status. (I can elaborate more why but this is the nature of modern hospital stays…)

There was one intriguing study that showed that heart failure patients who entered hospice had longer survival than those who had standard care. I think this is because sometimes – often – our care can be too aggressive. It is like having a car whose engine is dying and then stomping on the gas and insisting that it go 80 miles per hour down the highway. Sometimes less is better.

We were clearly talking and were on the same page now. He now understands why he needed this appointment. He is relieved to be talking openly about it. Up until now he was just afraid inside and didn’t want to tell anyone.

“My father told me that he started to see blotches and bruises on his skin. He told me that meant that he was going to die soon. He died a few months after he told me that. I am starting to see the same things on my skin.”

He knows that he is going to die. He can feel it inside of himself. He is afraid of the process and really does not want to be in the hospital. His greatest goal is to get as much time as he can at home. He does not want to be in the hospital and certainly does not want to spend the time that he has left in and out of the hospital.

We went on to discuss his fears and what would be unacceptable to him. This complemented my understanding of what was important to him. He twisted his face and arms to signal that he is most afraid of having a stroke. This he fears more than dying. Mostly he fears being unable to do anything. He does not want to be dependent on others.

We were almost done.

I adjusted his medicines.

I explained the resources that we could leverage to help him achieve his goals. I told him that we absolutely wanted to do everything possible to keep him home and out of the hospital. We talked about how we were likely to need additional help as his disease progressed. I explained hospice and how it can be helpful as a part of his care.

I told him one of my very helpful expressions: “Realistic expectations but not deprived of hope.” I explained that I was always going to be honest with him. I was not going to hide things from him. But I also was going to insist that he continue to live his life the way that was important to him. I emphasized that we really do not have any idea of how long he will live. He should not live waiting to die. He must live to appreciate and enjoy the life that he still has.

I asked him to monitor his symptoms and to call us if his symptoms changed. I told him that there were things we could do if he started to not feel well.

He was happy and relieved. He had come into the appointment tense and uncertain. Now he was happy.

We finished talking some more about his horses. We talked about Texas (where he grew up). He complemented my shoes. I complemented his boots. We smiled at each other and shook hands.

It was a really good consultation.