This post is also available in: हिन्दी (Hindi)
I wanted to tell you a story about a patient who recently contacted me for advice.
This particular lady was in her 50s in a very prestigious and high powered post and completely fit and well. She was married, had a daughter in Australia and had a wonderful social life with hiking with her girlfriends. Around Xmas time in 2020, she developed a flu-like illness and after that she started noticing that she was getting breathless on very modest levels of exertion. So she contacted her GP but unfortunately couldn’t even get an appointment for 3 weeks. Eventually she saw her doctor who examined her and suggested that she may have asthma and gave her some inhalers. She was asked to go back in 4 weeks to see how she was feeling. Unfortunately she felt no better and actually felt much worse. So she went back in 4 weeks and this time saw another doctor who asked her to stop the inhalers and suggested that it could be her heart and organised a chest X-ray and blood tests. After a few days she was called back to the surgery and saw another doctor who told her that the chest X-ray and blood tests suggested that she may have heart failure and that she needed to see a cardiologist.
This poor woman was completely stunned when she heard this and even before she could collect her thoughts and ask the doctor any questions, she was shown the door with the advice that she would hear from the cardiologists soon. This poor woman went home completely shell-shocked with her life turned upside down in an instant. As she hadn’t even had a chance to ask any questions, she went to the internet and looked up heart failure and her heart sank when she read about all the horrible things that could happen with heart failure.
Finally she saw a cardiologist who confirmed that she did indeed have heart failure and needed to start some medications as soon as possible and he would arrange for a heart failure nurse to see her. This took another 4 weeks and the nurse (another new face) who came to see her, asked her how she was (and she was a little better), increased her medications and said she was going to review her again in 8 weeks.
In the meanwhile this poor woman continued to remain completely confused about why her medications were being increased. She started noticing that she was more tired and not sleeping well. She wasn’t sure whether this was her underlying condition or her medications or that she was developing anxiety. She went to see her GP who said that he was limited with what he could give her because he was worried about how they could affect her heart. So her anxiety progressed and it started affecting her relationship with her husband. She stopped going out with her friends because she was told that alcohol was bad for her. She stopped hiking because she had been told to avoid any undue exertion. As she started spiralling downwards, it started affecting her employment. She was desperate to see her daughter but because of her diagnosis, her travel insurance became unaffordable and she started comfort eating, piling on weight which knocked her confidence even more and made everything so much worse.
Eventually, she decided to go and to see a famous professor of cardiology privately. This chap who spent no more than 10 minutes with her, looked at her medications and told her that she was optimally managed and nothing else was needed and discharged her. It was after this, she contacted me to ask me for my advice and in this video I will talk about what I advised her.
This lady’s heartbreaking story shows the problem with modern day medicine. This poor woman had seen a multitude of different nameless faces over the course of 18 months and was in a far worse position both physically and mentally than she was when she had started. SHe was on 7 or 8 new tablets everyday when she had never taken a tablet in her life before her life changed and unfortunately she didn’t even know what these medications were doing for her. Most disappointingly, despite all these encounters with healthcare professionals, the patient felt that she had been left to manage completely on her own,
This is far from optimal management. This is the kind of care that enslaves and enfeebles a patient and makes the patient worse rather than better. Today I wanted to chat to you about what I feel optimal care for heart failure should be and how care when properly administered can empower and liberate the patient rather than contribute to what happened with this poor woman. The principles that I am discussing here can be applied to all chronic diseases.
The diagnosis of any chronic long-term disease can be a traumatic and life-changing experience for a patient. As there is often no easy cure in sight, the patient often finds himself thrown into a chaotic new world where he or she has to start making sense of medical jargon, can prove to be a confusing, scary and lonely journey for the patient .
The most important first principle is for the doctor to understand that the patient is an individual person and not just a number or just a body and therefore all management has to be based around that particular patient’s wishes, and that particular patient’s values and that particular patient’s physical, psychological, spiritual and social needs.
Secondly all management should be ensconced in kindness, patience, connection and good communication. If we are unable to build a relationship of trust with the patient then we are going to fail in achieving the best outcome for that patient and this is why engagement and empathy are so essential. In this setting, healthcare professionals should never be afraid to show their own vulnerabilities to the patients. This is not unprofessionalism. This is embracing humanity.
Thirdly we need to provide the patient with holistic care and therefore we need to build a team consisting of healthcare professionals from different disciplines who can address that individual patients needs by talking to them but also talking to each other in a language that is consistent and understable to the patient.It is also important that the same healthcare professionals deal with the patient every time. How can you possibly build rapport and trust if you never see the same doctors/ nurses more than once?
Fourthly, we need to educate the patient on the condition in jargon-free and reassuring language on what risk factors and lifestyle choices may have led to the development of the condition and on practical ways to modify those risk factors as aggressively as possible. Similarly we want to empower the patient to identify their own triggers which could make their symptoms worse and avoid them if at all possible.
The next step is to talk about treatments. I break them into 4 categories. Tablets, procedures, rehabilitative therapy and psychological therapies. I’ll go through each of them step by step.
These can be divided into 2 groups
Medications that improve quality of life (usually by relieving symptoms) and medications that can prolong life.
Medications that improve quality of life in heart failure for example include diuretics. Diuretics are not known to prolong life but can ease symptoms. If a medication that is being given to improve quality of life but paradoxically worsens quality of life by giving the patient severe side effects then there is no reason to take it. Other medications that may improve quality of life include pain killers and palliative medications.
Medications that prolong life
Unfortunately the patient will never be able to measure his own length of life and therefore the life-prolonging effects of a medication can only be relied upon based on data that is accrued from population-based studies ideally in people who most resemble that patient. In heart failure there are 4/ types of medications that have been shown to improve prognosis and ideally you want the patient to be on all of them if possible because they all work synergistically. These include ACE inhibitors (and now a medication called Entresto), beta blockers, Mineralocorticoid receptor antagonists and now a new class of anti-diabetic medications called SGLT2 inhibitors and ideally wherever possible the patient should try and take a little of all of them as opposed to taking lots of one and none of the others.
Again there are surgical interventions that may help quality of life or even prolong life.
So in heart failure, one procedure that can help improve quality of life is the implantation of a biventricular pacemaker. When the heart is weak, it can become dyssynchronous and one part may contract before another and therefore implanting a pacemaker which makes all the different parts of the heart contract together can substantially increase the amount of blood that comes out of the heart with each heartbeat and this then translates into the patient being able to do more.
Interventions that may prolong life include implantation of a defibrillator. Patients with a very weak hearts may be prone to life threatening heart rhythm disturbances and therefore a defibrillator within the chest can detect this and deliver a life-saving shock there and then and thereby prolong life.
Other interventions that can help are devices known as left ventricular assist devices which can mechanically augment the pumping function of the heart and in the most severe cases, there is even the option of heart transplantation which whilst a huge undertaking can completely change a person’s life. It is worth knowing that people who may not have been deemed suitable for heart transplantation once upon a time may now be candidates because the laws around organ donation have changed.
Also heart bypass operations and stents can help some patients especially if the heart is weak due to a lack of adequate blood in which case opening up the blood vessels can allow more blood to get to the weakened areas and improve muscle function.
Physiotherapy, conditioning exercises, mindfulness and yoga can be extremely helpful in terms of improving quality of life. Chronic disease of any sort can lead to muscle weakness and increased frailty which makes the condition even worse and by encouraging patients to undertake regular moderate exercise will definitely improve mental and physical health. So I was able to tell this lady that there was no reason why she couldn’t go hiking with her friends (as long as she did it gradually) because not only would it be good for her mind and her confidence but it would actually also be good for her heart.
Physical health and mental health are very closely aligned and if we want to get a patient physically well we cannot ignore any mental unhappiness. My patient had been imprisoned by fear and I wanted her to know that fear wasn’t stopping her dying but it was actually stopping her from living. I encouraged her to speak to me about her fears and she told me that she was fearful of intimacy and she was fearful of travelling and she was even fearful of having the occasional drink when she was with her friends. I was able to tell her that these were all unfounded fears. There was no reason from a heart perspective for her to fear intimacy with her partner. There is no evidence at all that this was harmful and in fact it would be good for her mental and therefore physical health. Similarly from my perspective there was absolutely no reason why she couldn’t travel to see her daughter if she wanted to as again there is no evidence that travelling in high altitude pressurised cabin would have a deleterious effect on her heart. Finally I was even able to tell her that there was no reason why she couldn’t have an occasional small drink with her friends once in a while as long as she did it sensibly.
The next step in management is regular follow-up and it is vital that the patient sees the same doctor so that both doctors can pick up and build on all the constructive work that was done at the last visit.
Finally I think there is a really important part of management of chronic disease that is not really emphasised and that is valuing the learning that is gained from such an experience. For the patient, it should be about instilling gratitude in their lives. Whenever I have had patients do this, their quality of lives has improved and therefore I think gratitude has to be an essential component of our journey of healing.
For the doctor, I think the learning is gained through reflection. Every patient and every encounter is an opportunity for the doctor to reflect and use that reflection to better himself. That reflection should not be about working out whether as a doctor one did anything wrong but more importantly could we do things even better. Could we have been kinder – could we have been more empathic – could we have been more human?
This to me is what ideal management and care should be. This is what will allow us to stop enslaving patients but instead empower and liberate them. This is how we become healers rather than pill peddlers.
I am delighted to tell you that that particular patient is much better. She recently sent me a picture of herself, with a beaming smile on her face and her newly born -grandson in her arms. She had finally made it to Australia.
I want to leave you with a final thought.
Many of you have will have heard this story but i find it particularly poignant
One day, an old man was walking along a beach that was littered with thousands of starfish that had been washed ashore by the high tide. As he walked, he came upon a young boy who was eagerly throwing the starfish back into the ocean, one by one.
Puzzled, the man looked at the boy and asked what he was doing. Without looking up from his task, the boy simply replied, ‘I’m saving these starfish, Sir.
The old man chuckled aloud, ‘Son, there are thousands of starfish and only one of you. What difference can you make?’
The boy picked up a starfish, gently tossed it into the water and turning to the man, said, “It made a difference to that one!’”
It is only by starting to make a difference to one person will be able to eventually make a difference to society at large.
I hope you found this useful.
Here is a link to the video
Keywords: Chronic disease; heart failure; heart failure management; Dr Sanjay Gupta; Yorkcardiology; cardiomyopathy treatment
This post is also available in: हिन्दी (Hindi)