Week 10: Lecture 05 - Last Days of Life

So, hello friends and today we will be discussing a new module which is called the last days of life. Well, I am Dr. Abhijit Dham and I am the President of the National Association of Palliative Care for Ayush and Integrative Medicine. Well, the last days of life are very important for all of us, isn't it? Because you see death is the only guarantee that we have, nothing else actually comes with a guarantee except our death. But sadly though we do not want to think about our death because we live in a death denying society and because we live in a death denying society we do not have any plans made out for our last days of life. Because we do not want to acknowledge the presence of death in spite of the fact that that is the only guarantee. We do not invest in our last days of life, we invest in all sorts of foolish shares and market stocks which do not have a guarantee. But the thing which has a guarantee we refuse to invest in that. The last days may be some of our most significant producing opportunities to create final memories, to give final gifts, to find spiritual peace and to say goodbye. And this is what the family remembers most for a long time after the patient's death. Now what exactly is this end of life care? What do you mean by end of life care? Well the General Medical Council of UK it defines approaching the end of life as when a person is likely to die within the next 12 months. So if you think that this particular patient will not survive for more than a year then the care model which you need to follow is called the end of life care. However, the Indian Council of Medical Research defines it as an approach to a terminally ill patient that shifts the focus of care to good symptom control, comfort, dignity, quality of life and quality of dying rather than treatments aimed at cure or prolongation of life. So basically focusing on all those treatments which are directed to improving the quality of life of the patient as well as that of the relatives. So why palliative care? Because death is inevitable. Death is inevitable but suffering is not inevitable. Suffering has a cure. Suffering can be tackled. You do not necessarily have to suffer and die. You can die with dignity. And good palliative care is the answer. People are more afraid of pain and suffering than death itself. And palliative care can help alleviate that suffering. Now actually if you see the role of curative treatment in life limiting illness only 20% of patients of cancer were actually helped by curative treatment. In renal disease only 6%, in HIV AIDS nearly 30%. So in all the above situations the need is for good comprehensive care including palliative care throughout the entire course of illness. So palliative care should ideally start right from the point of diagnosis and to be continued even after the death of the patient because the family is still in a state of bereavement and suffering and grief. So that also needs to be addressed. Despite several reports and guidelines over the past few years on the importance of managing end of life care, knowledge and confidence among hospital doctors is still far from ideal when looking after those in the last few days, weeks, months or even years of life. This was published in the Lancet. That is because simply as doctors we are basically trained to save lives, to sustain lives because death is often seen as a failure of good medicine. But it is not so. We need to understand that death is physiology. Death is not pathology. Death is bound to happen. Death is natural. So what we can do is to make the process of dying more comfortable, more acceptable with less suffering. So this is what we call shifting gears as we approach the end of life. Now if you are riding in the city limits, if you are driving in the city limits, you hardly can drive above you know in the second or third gear. But when you go to a highway, you can drive in the top gear. So that is the difference. So when you come to a congested lane, you need to change your gears. So similarly when you are approaching end of life care situations where the patient is not going to survive beyond 12 months at the most, there you need to change your modus operandi in treatment of the patient. You need to focus on comfort therapy rather than on curative aspects. And there is something called the surprise question. Ask yourself is this patient, would I be surprised if this patient actually survived beyond 6 months or 1 year? And if you feel that yes, this patient is not going to survive for more than 6 months or 1 year, then you know that it is time to initiate end of life care for the patient. And you also need to consider the potential benefits of treatment versus potential burdens of treatment. So the aim of treatment should be to make the person as comfortable as possible, active treatment and efficient good quality care. And at all times maintain the identity and dignity of the patient. That is very important. The wishes of the patient needs to be respected, right. Give death a chance because we have no right or duty, legal or ethical to prescribe a lingering death. So please give death a chance. And slowly they say I learn about the importance of powerlessness. The dying know we are not God. All they ask is that we do not desert them. So do not desert your patients. Be available for them. If you are not able to be available physically, be available, use technology, be available for them on the phone at least. So what is important is that will we die in a manner consistent with the way we lived which respects our personal values, spiritual beliefs, cultural background. So are we going to die in that manner? Where will we die? Are you happy to die in a hospital or are you happy to die in an intensive care unit, you know, hooked on to ventilators and all in an alien environment or are you happy to die at home? Please ask yourself this question before deciding or implementing or rather you know giving the judgment to another dying person to be taken to a hospital. So where would you like to die and you need to answer that question first. So this was an interesting study which actually showed the place of death and correlation with the quality of life. See the quality of life was the best when patients died at home. Physical comfort was best when patients were at home or combined with a hospice. And psychological well-being was the best when patients died at home. So home after all becomes the best place to die. But where do people die nowadays in this modern society? People die in hospitals. People die in intensive care units. And we actually take pride in declaring that my father, you know, he was admitted for 20 days in an intensive care unit before he died and I gave a bill of, you know, 50 lakh rupees. You should be ashamed of yourself that you have, you know, actually subjected your father to a lingering and painful and lonely and undignified manner of death. So we need to really sit back and think as to what are we subjecting our patients to. So this is an example where, you know, death in a hospital hooked on to a ventilator or this where would you like to die, dying at home, surrounded by all the family members and this lady is actively dying. In fact, a few hours after this photograph was taken, this lady passed away. This is her, this is the husband who is watching her. This is the daughter-in-law. She is giving the last few sips of water. And all the family members, you see, all of them are surrounding the patient. Such a beautiful way to die. So what type of death would you prefer? So how to diagnose that the patient has approached the end of life? It is not possible to predict with certainty. And often there is a reluctance because most of the doctors and medical personnel see death as a failure of their therapy. So they are reluctant to admit that the patient is sinking in spite of their therapy. In cancer patients, most of the studies about diagnosing dying has been done in cancer patients and as a patient becomes profoundly weak, essentially bed-bound, drowsy, disoriented, disinterested in food and fluids, has difficulty in swallowing medications and all. If all these symptoms are there, all these signs are there, then you might assume that the patient would survive maximum for around 8 to 12 weeks at the most. Of course, these are just, you know, statistics. There can be aberrations in this. Because as I said, it is not possible to predict with certainty. So as the patient enters the terminal phase, he becomes weaker, loss of interest in surroundings, drinking less, sleeping more, decreased performance status, decreased response to treatments, decreasing reversibility, all these things will come up. And this was a beautiful study which was done by Lichter and Hunt. They did, they, you know, evaluated the symptoms in a series of 200 patients admitted to a hospital. What were the symptoms in the last 48 hours of life, right, and they found that noisy and moist breathing were in 56%, urinary dysfunction in 53%, pain 51% and so on and so forth. So what does it mean? It means that of all of you who are now listening to my lecture, half of you, that is 51%, half of you, that is every alternate person before death would have pain before dying. Half of you will be urinating in your bed before dying. Half of you will be having difficulty in breathing before dying. So this applies to you also. It is not that you are safe. Because you also are a part of the statistics. So it is all about you and how you choose to spend your last days and about how you decide to invest in your last days. So it is about you. And then there are two roads to death. So the first road is a difficult road where you become restless, confused, you have hallucinations, you have delirium, you have convulsions and then you finally go into coma and then you die. And then there is a easy road where you become sleepy, lethargic, uptendered and then you have coma and then you die. So the thing is that by good palliative care, you can bypass this road. All the roads can be the easy road, the usual road. So good palliative care becomes the key out here. So this is a picture where this is a son and he is, you know, palliating his father, he is reassuring his father, he is standing by his father who has severe dyspnea. Now what is the concept of a good death? How would you like to die? Because this is a very personal concept. So many, there could be so many features and I would ask all of you to sit down and write down in a diary that suppose I have two days to die, what would I like to do? Where would I like to die? How would I like to die? So where would I like to die? How would I like to die? If you just write down, then that is your, you know, those are your own personal choices about how you would like to die because that is important, no, you need, you would have certain expectations about death, right. So that is your concept of a good death. So there could be so many, so many variables as described in this slide. And this was one of my very early patients and when I went to their house, this is the daughter-in-law and this is the patient, the mother-in-law. She had carcinoma of the gallbladder and when I went up there, I saw the daughter-in-law sitting up on the bed and holding the mother-in-law physically because the mother-in-law was having such a lot of pain. The mother-in-law could not lie still. She was tossing and turning and before we did anything, we just gave a dose of analgesics to this lady and sat there for half an hour and half an hour later, this lady could sit up and speak to us. So this highlights the importance of good symptom relief in enhancing the quality of life. So these little interventions can actually enhance the quality of life in the last days of life. Pain is inevitable but suffering is again optional and it is not always a physical pain. It could be a psychological or a spiritual thing which the patient seeks. Like this lady, this elderly lady, she came all the way from Tripura. She flew down to visit her daughter and her daughter was pregnant at that time and she spent around 3 months with her daughter because she had a spiritual wish to hold her grandchild. In her lab before she died and we could by good palliative care, we could make it possible. So this is the importance of good palliative care and how it can improve the quality of life. This is all about the quality of life and this is Viktor Frankl who invented a therapy called logotherapy. So he says that suffering seeks validation to blossom positively. Everybody suffers but suffering has to have a sense of meaning. If you cannot give your suffering a sense of meaning, then you continue to suffer. Every suffering has to have some meaning, be it any type of meaning. It could be a seemingly scientific meaning or a seemingly very unscientific meaning, does not matter. It could be a spiritual meaning, it could be a religious meaning that why am I suffering, why is this happening to me? Why is God punishing me or why am I such a wicked or a wretched person that this is happening to me? So suffering needs to have a sense of meaning and suffering needs to be validated. You need to confront and tell the suffering person that it is okay. I understand that you are suffering and I respect the way you are tackling your suffering. So that validation is very important to give suffering a sense of meaning and purpose. There are basically 3 components which we need to address while treating suffering. First is to recognize suffering, that is you are validating suffering. Then you relate to individuals in suffering, that is you show your compassion. And then you react to suffering which is again a step forward in compassion. So recognize, relate and react to the suffering. And this was another example, this boy, little boy, of course he is no more and he was one of our patients, very early patients and he had a very aggressive form of lymphoma. And since his early childhood, he never could attend a school because all his childhood, all his early years were, used to be spent in hospitals receiving chemotherapy. And finally he was labelled as non-curable and he was referred to us. And this little fellow, he always had wanted to attend schools because he had never been to a school. So and he could not walk, so he was on a wheelchair and so we brought him this huge watch also which he wore very proudly and he wanted to go to a school. So we spoke to the principal of a nursery school and she permitted him to come and sit in the classes. So he would go to the school daily, we gave him a large stiffen box and he would go and sit in the last bench and he would sit and eat a stiffen in that class. And then he would, you know, make small drawings. And that was so beautiful because that gave him, these were the paintings which he made. So he could only go to school for 4 or 5 days in total but that was something which improved his quality of life. So these are the little things which we can actually go, walk that step further and do to improve the quality of life of a patient. Now studies on key components of quality care actually showed that clinicians consistently ranked technical skills higher than intrinsic qualities. That is even now when we choose a doctor, we go by his qualifications, we go by his technical skills which is opposite to responses from patients and families. But for actual patients who are interacting with doctors, what do patients want from their doctors? The patient wants that the doctor should spend more time with them, listen to them, be compassionate towards them, right. So most of the patients and family members want a kind ear, a kind helping ear, a person who can share their suffering. So that is the qualification which we seek in palliative care, compassion. This here was again an example of what we call a good communication, good communication by which, you know, this is me sitting with a patient and we are both at the same eye level and she is responding in a very positive way in spite of her chronic pain and a good communication is in place. We are very close to each other without actually physically touching each other. There is no barrier between us and communication is happening, healing is happening and that is what we are concerned with. Here treatment, there is no scope for a cure or treatment, but what we can do is heal and that is divine. This is another example. This here is my guru in palliative care, Professor Jack Uchak from Poland who imported the skills of palliative care into me and this was a patient where he had come down to India and this was a patient of ours and this was during her last days of life with all the family members surrounding her and this is what she had wished for, to hold her great grandchild in her lap before she could finally die and we could make that happen. So these are small gestures which can help improve the quality of life and bring a sense of meaning and purpose to your suffering and help you transcend your suffering. So as I said, as the patient approaches the last days of life, he becomes more and more weak, bed bound and he refuses to take food, decreasing appetite, food and fluid intake, which becomes a source of distress for the family members, but we need to tell the family members that this should not be a source of distress because the patient is gradually entering the dying phase. His physical requirements have come down, his basic metabolic rate has come down, right. So this should not be a reason for concern about food intake, fluid intake. You need to explain to them in a gentle fashion because food and fluid intake has always been a cultural and a social aspect, right. So we should also respect the wishes of the family members, but we need to explain to them in a gentle way that the patient really does not need that and actually forcibly trying to feed a patient might actually kill the patient earlier. So hydration again, as I said, people will, many patient relatives would say that please start a saline infusion or whatever it is. So we need to tell them that it is not only undesirable, it could have certain grave consequences which could actually enhance the death of the patient. Now once the patient enters the last days of life, you need to understand and you need to respect the spiritual aspects, the religious aspects, the social culture of the patient that so many things would come in like you know like in Hindus, they would like to give the Ganga gel, they would like to or somebody would like to tie a tabiz or something of that sort. Christians would like to offer some prayers at the bedside and so on and so forth and you need to respect those values and perhaps during the last days of life perhaps those things, those ritualisms might be more important for you know for enhancing a good closure, for bringing about a good closure. This again a dying patient and here I am explaining how to give subcutaneous drugs because the patient at the last days of life cannot swallow, but you need to give pain medications and all to maintain the good quality of life. So I am explaining how to do that both to the patient's wife and the patient's brother. So as the patient starts growing weaker and weaker, there is a loss of ability to swallow, there is a death rattle, I talked about it in the module of secretions. You need to focus on mucosal and conjunctival care because the eyes cannot be closed fully, you need to cover the eyes properly. Loss of sphincter function that is the patient's loss of control of bladder and bowel motions and this can be very distressing, but you need to talk to the family members and show them how to do it in a proper way, how to clean up the patient in a proper way, maybe catheterize after talking to the patient and so on and so forth. And this is how we take care of the secretions you know, nursing the patient in the lateral position and collecting the secretions collect on the towel out here and which you can remove later on. And then you can have terminal delirium, I have talked about delirium in the module of delirium and you can go through that. Pain, you need to take care of pain, although the need of drugs especially if the patient has renal failure, then the need of morphine can be reduced. So you have to be careful out there. But the pain medication should continue because you are more focused on improving the quality of life. You got to take care of nausea and vomiting, so many things you can do. The patient can be restless. So there can be so many cause of restlessness like pain, pruritus, a full bowel or a full bladder, hypoxia, so on and so forth. So there was a particular care pathway called the Liverpool care pathway, which is adopted as I said the changing gears when you, you know, you need to change gears when you transit from a curative therapy to a palliative therapy. So you need to focus basically on comfort measures, measures that basically give comfort. So what is the appropriate treatment? What is the prospect of life? What is the aim of treatment? What is the risk or benefit? And does it lead to a lingering death? Are you actually prolonging the process of dying? Because you are not giving life, you are basically prolonging the process of dying. So are you actually doing that? You need to ask yourself that. So you need to have an anticipation, you need to prepare yourself, then you need to face the event and then there is a bereavement. Once the patient passes away, there is a phase of bereavement also which comes in. So the goals of care again, communication. So during the whole process, whole care process, you need to have a constant dialogue with the patient's family members because they have to be kept in the loop because they are most of the time they are lost, they do not know what is happening, they do not know what to expect. So you need to have a frank and ongoing dialogue with them so that they also are in the loop because it is ultimately the patient and the family. In this whole movie called palliative care, the patient is a hero, the family is the heroine and we as palliative care providers are just the, you know, comedians out here. We just come for short periods of time in and out. But it is the patient and family who work through and make a sense out of their suffering. So give time to them. So during end of life care of the dying, the goal of treatment should shift from cure to comfort. The Indian Society of Critical Care Medicine and the Indian Association of Palliative Care, they had a joint policy. It provides the basis of which doctors can practice good medicine and provide optimal care to the patients when death is imminent. The nature of legal implication should not deter physicians from providing the best and ethical care for the patients, right. We need honest, transparent and compassionate communication and meticulous documentation. So it is not only communication but also documentation together with effective palliative care aiming at ensuring a good death for the patient. So there are certain many key elements for care of the dying. One is to recognize the patient is dying. Then communication, spiritual care, anticipatory prescribes, so on and so forth. There are so many aspects which come in. And then the patients finally enter the terminal phase which is a period when day to day deterioration particularly of strength, appetite and awareness are occurring. Now things are moving at a faster pace. Every day or hour to hour changes are happening. Like this is a literally dying patient and a few hours after this photograph was taken the patient died. So rapid changes are happening and this is a syringe pump and he is getting a continuous infusion of painkillers. Because as I said quality of life is important, symptom, good symptom control is important. So this here was another little child who had come to my house and you see how the child is bonding so beautifully with his father. The child is so comfortable in his father's lap. Now if you take this child away and admit him to a hospital or a hospice then this beautiful bond is broken. So in trying to do more you are actually doing harm. So prime nor nocere, please do not do any harm. First of all please do not do any harm, non-maleficence as they call it. And this was another photograph which was taken and this is an elderly person who is unconsciously holding on to the feet of his wife. His wife is actively dying and we had just broken the news that she would not survive for very long. You see she has just one leg. The leg was amputated off here and there were metastases in her lungs and when we told him that your wife does not have very long left, see his expression and unconsciously he is actually holding on to the leg of his wife as if that I will not let go of you. And this is his daughter-in-law. He has become unmindful of his daughter-in-law now because otherwise this gentleman would never do it in front of his daughter-in-law. But now he has become unmindful because of the suffering. He is trying to come to terms with his suffering now. So these beautiful pictures can only be found if you go down to the houses of the patient because good home care is the backbone of good palliative care. Here this is another picture in the last days of life, music therapy. This lady who is actively dying, we got in our volunteers who did music therapy for her and she was so happy. So those little moments of happiness which you can give back to your patients improve the quality of life. Religious concerns as I told you giving Gangajal and so on and so forth. Illness is both soul shaking and soul evoking. We lose innocence. We know vulnerability. We are no longer who we were before this event and we will never be the same. But then we can smoothen down the road. We can help improve the quality of life of the dying. Respite care also becomes very important because the family members have been, they are also suffering and perhaps suffering more than the patient. They also need a few breaks. So respite care becomes important where you can go and you know ask those family members to take a break for half a day or one day and then you know take care of the patient for half a day or one day or whatever it is. Establishing trust and a therapeutic bond is of essence and you have to give realistic hope. Do not give false hope because if you give false hope the patient and the family members lose trust in you. So give a realistic hope. Communication a good communication is important and this will be discussed further in the module of communication. Listening active listening is more important than speaking. Listen you need to listen and active listening. Hope is something which you should not take away and then comes bereavement support. After the patient is gone your palliative care still goes on and this was me visiting the grave of a lady in Poland. This is the lady. This was the grave of her daughter. This was the grave of her husband. She had lost her husband. She had lost her daughter and she made an anticipatory this grave is empty you see. This grave this place is empty because she made it for herself. She planned it that when I die they should bury me here. So that is something which is called advance planning. Planning for your own death that is very important. So what do you want? Do you really want to opt for life insurance where you keep on giving premiums and that money never comes to you. You know you give you make all those life insurance policies put in your hard earned money and when you are actually suffering and when you want the money you will not get it. When you die your family gets it. So your hard earned money somebody else is enjoying or would you like death insurance which is basically good palliative care. So what do you want? The choice is yours. Thank you.