How to Find Meaning in Both Life and Death

SUMMARY

Any discourse on finding life's meaning would be incomplete if it does not touch on death. In knowing the reality of death, we can be urged to find meaning in this one life that each one of us is gifted with. Just as the sight of the finish line drives a runner to give his one last sprint for the gold, accepting the reality of life's end - when it ends - could push us to reflect always on the direction that we taking each day. What am I moving towards?

Our guest is Dr Maria Fidelis Manalo who is a palliative care specialist. She heads the section of supportive oncology and palliative care at the Augusto P. Sarmiento Cancer Institute of The Medical City. She has helped many terminally ill patients not only with medical care but also managed their psychosocial and spiritual care. For her, a person who has lived life to the full even if it was an ordinary life will also find meaning in death. On the other hand, persons who have not known what to do with their life as if life is passing them by will not know what to do when dying hits them.

• Every day is a gift. Be amazed at and grateful for what the gift contains.
• Make a difference in your life and in the people who are important to you.
• Make sure that there is no regrets in taking care of the people who matters to you. Help each other to become better persons.

INSPIRATIONAL QUOTES

FULL TRANSCRIPT

Avic: Good evening, everyone. I'm very happy right now that we have as our guest a good friend of mine, Dr Maria Fidelis Manalo. And we can just call her Liza, that's the shorter name. She is a palliative care specialist. She has also helped me in taking care of my mother in the last moments so I'm very proud to bring you right now.

Liza: Hi Avic. Hi everyone. Glad to be here.

Avic: Thank you very much for coming. Many times, I suppose you have your own experience that at the threshold of death people start finding meaning in their life or not finding meaning. I would like to ask you my first question: how did you ever get into palliative care?

Liza: I've always been interested in cancer care and when I was in residency training in family medicine in the University of Santo Tomas Hospital, I saw a lot of cancer patients having a lot of pain and suffering and therefore I was wondering if there's anything else we can do to relieve their suffering. As I practiced some more, I realized that there's more to suffering than just physical suffering. In fact, what makes cancer patients or any terminally ill patients suffer is of course the fear of death and all its consequences on the patient and the family, and the unknown. How will I die? Will I die in pain? Will my family members be around when it's time for me to go? How will my family cope when I'm no longer there? So, all those existential questions that were causing a lot of psychological emotional and even spiritual distress on my patients. And the pain was not relieved when I was still doing my residency training. So, I felt compelled you might say to do something about it and that's why I decided that maybe it would be good for me to pursue further training fellowship training in hospice and palliative care.

Avic: What year did you start the training?

Liza: The palliative care fellowship program started in UP-PGH way back 2002 but I started my own training in 2006. It's just one year of additional training for us in family medicine.

Avic:  Do you find that more doctors are familiar with palliative care? I suppose they are the ones who refer to you, their patients?
Liza: Maybe at this time more doctors are familiar with it especially with universal health care law. Palliative care is very much part of it now. We want to bring palliative care to the community, to the farthest corner of the Philippines and to the poorest of the poor you might say who may not be able to go to tertiary private hospitals for palliative care. But when we started, it was going against the grain. People still have the misperception that to be referred to palliative care would mean that they have given up on the patient, they're not any more willing to fight their cancer and therefore it's like just waiting to die. And many people couldn't conceive of spending their last days and hours waiting for death. They would rather die fighting rather than to wait for the end without doing something. So, there's always that compelling urge to do something all the way to death.

Avic: What does it mean when you say they would want to die fighting? Do they want to go back home, do some work?

Liza: No, when I say die fighting it's like if they're suffering from cancer they would rather go through further surgeries, they would have chemotherapies even if they have already undergone so many cycles of chemotherapy. They would want to go abroad for example. Some would even if they have the means ask for stem cell therapy which is still not a standard of care for cancer. So, they're willing to spend millions to try experimental treatments just so they'll have more prolongation of life you might say and more time with their family which is a legitimate desire but obviously there is no acceptance yet of the natural course of their illness.

Avic: In determining how long still the patient must live, how do you find out that one has six months to live? Sorry for my ignorance.

Liza: We call that prognostication. The prognosis is how the disease will turn out. It’s the outcome whether the patient will get cured, will have remission for a time and then their cancer might occur, or they will progress, or they will die. We call that prognostication. That's a skill we learn when we are still in training. And of course, the more experience you have the better you are at prognostication. But there are signs and symptoms of disease progression clinically and even their labs point to it. Then there are signs and symptoms of impending death, meaning I can tell for example if my patients have only a few hours or a few days to live. You can see it because they're already sleeping for a long period of time, they don't even want to eat, they cannot take their oral medications anymore, their vital signs are becoming abnormal, their urine output is lesser. So, there are objective parameters with which we check to see if they're really reaching the end of life.

Avic: How precisely does palliative care help them and also their family once they near that time?

Liza: Well actually we always clarify that palliative care is not synonymous with end-of-life care. Because when you talk about end of life that's properly speaking hospice care. Hospice care is the care of somebody who has only six months to live. It's very important to make that distinction because in other countries hospice care is covered by Medicaid. That means the insurance of the government will pay for all the needs of the patient who has only six months to live but in the Philippines, we don't have that kind of health care. Palliative care is appropriate for any patient suffering from a serious illness that is potentially life-threatening and for which they are having to undergo a lot of suffering. In other words, we're not just dealing with cancer patients. We have patients who are suffering from other end-stage diseases like end-stage liver or end-stage renal. They can be those on dialysis or they don't want to have a dialysis anymore because they're sick and tired of going to the hospital for dialysis and they feel like they're not getting any better and their quality of life is very poor. We have patients with end stage COPD. (they're always breathless), those with end-stage heart diseases, (again they're always breathless and weak) and also anybody who feels that their quality of life is very poor because of their illness. It is better to refer them to palliative care so that we can do something about those distressing symptoms.

Avic: Sometimes people might think you're just talking the person to prepare for death. Is that all like counseling?

Liza: No, because when you talk about palliative care it's an active holistic care to anybody with a potentially life-threatening illness. That's why I was explaining that there's more to suffering than physical pain. When you're somebody who's diagnosed with cancer even if it's not yet stage four, you feel as if the rug is pulled under your feet. And then you can't think, you don't know how to feel. It's like all your dreams are not anymore within your reach because you know that somehow, I have less time to achieve my dreams. And then of course there's that financial worry - will I be able to afford anti-cancer treatments, for example. And that's a legitimate concern especially in a third world country. And then there’s existential distress like what is the meaning of these and in the first place they ask why me they will always say I've tried to be healthy, I eat well, I exercise, I don't have any vices. How come? My family history is very good. No one in the family has cancer so how come I have cancer and why am I dying? That existential distress of why me and what is the meaning of all this comes so that's what we try to achieve to help patients with and their families.

Avic: W you say that's what we try to achieve, are you alone in this or you have a staff?

Liza: Most of it, it's really the doctors who address all these physical, mental, emotional, and spiritual concerns. In other countries they do have staff. For example, the counseling part is actually not handled by the doctor, it's handled by a psychologist who are very trained in counseling and even cognitive behavior therapy to help address their distressing symptoms. Even the social worker is very actively managing the psychosocial aspect of the illness, even the search for financial resources for the patient to tap or to afford anti-cancer treatment for example. But in the Philippine setting it's more a one-man's job to address all those needs of a terminally ill patient.

Avic: Have you done the counseling like being the psychologist?

Liza: Yes, we have a training. We’re trained to do counseling. Except that if there are too many patients and all of them are waiting to be seen by you, even if you would like to spend longer time with them then you'll have to somehow cut short the consult and leave it for later. There's always that opportunity to have a follow-through anyway unless they're really dying when they're referred.

Avic: When they're really dying you, is it like it's just the family you must talk to?

Liza: Correct and in fact that's always been our heartache when patients are referred too late. For example, they are already intubated with a mechanical ventilator in the ICU and they're already heavily sedated to make sure that they're comfortable. Then you might say what else can I do for this patient. In that sense the focus of care will be towards the family- how they are also understanding what's happening in the patient, how they're coping. Yes, but we would like patients to be referred early because what we want is to improve their quality of life that they are able to identify their bucket list and do something about it.

Avic: I heard that sometimes the awareness that one is dying can make one really realize that there's so much work to do and I still can contribute. But at the same time the other thing there is to say I only have three months to live, what more can I do and just give up. Do you encounter people are more positive and really trying to do well?

Liza? Yes, I have two such patients admitted now. I was doing the rounds with my fellows, and we were seeing how edifying it was to take care of these particular patients now. One is a female who's only in her late 40s or early 50s. She's terminally ill. She knows she has only a few more months to live. I was asking her what would you like to do with the last months of your life? They have full acceptance of the terminality of their condition and her to-do list is actually quite simple- she just wants to go to the beach, she just wants to go to Tagaytay. And she was asking if I would allow her to do that and I said of course why not. I mean you may be kind of weak but you're not breathless, you can still walk with assistance, and you have such a positive outlook that I think you're going to enjoy yourself going to the beach and going to the Tagaytay. And I said let's be Facebook friends and you post a lot of pictures so that I'll see how much you're enjoying your trip to the beach and to Tagaytay. This particular lady is unmarried and they are just two of them -she and a female sibling. Of course, it's the female sibling who's kind of broken-hearted about the impending death of her older sister. My other patient is also in his early 50s, a father of three teenage children, two of whom are still in college. The wife keeps telling me that they have been sweethearts since they were 15 years old. they've been married for 27 years and she's heartbroken at the thought of losing him. But the patient himself is so calm and cheerful about the whole thing I hardly saw him wince except when he's suffering from physical pain. But the moment I managed to relieve his pain he goes back to his usual positive self. He was the one who drafted his preferences meaning he was the one who told his family that he doesn't want heroic aggressive measures to be done, no intubation, no ICU admission, no surgery nothing. He just wants to spend these remaining days or weeks with his family.

Avic: When you say that the second patient the guy decided not to have extraordinary measures, is that because of your own intervention or you already found him really with that kind of attitude? I mean some people are prepared to die in that sense.

Liza: No in the first place the kind of cancer he has is a skin cancer. It's called the melanoma and from the very beginning the medical oncologist told him that nothing works for melanoma. There's no effective chemotherapy. Radiotherapy has very minimal role. He already had surgery for the initial lesion and whatever targeted therapy might be there in the market, the price of that targeted therapy is so prohibitive like 300 000 per month for life. He would rather spend his money on his children so it was with the fully informed decision on his part that he'd rather allow the natural course of illness to happen and he has always been prepared towards the eventuality of death from the first day I met him.

Avic: Do you find that it's much more difficult to help people or it's more heart-rending to help people who are dying if they have many dependents that they're going to leave behind? I mean you're talking about a single person and a married person with three children and a wife.

Liza: The challenges for these patients are different of course. If you're single and you have only your siblings or even your parents sometimes (if they're too young their parents are still alive right?) Then the burden of care will fall on the parents and the siblings. But depending on how close they are to their parents and their siblings then of course it's heartbreaking for them. But it's different when they're married with children, if it's the father who’s mainly the provider and if he's hands-on with the care of his children. I never actually saw him worry about how his kids will turn out because the moment I met him and the wife and told them about the prognosis I said I want you to bring to me your three children next time for counseling. I want to talk to them individually and ask how they understand their father's illness and how they are coping or not able to cope and then what kind of help do they need from us. Today when we know that their father is really deteriorating, I asked to talk to them again and of course they're all crying but since their father has such a calm joyful acceptance of his illness you might say even if it's breaking their heart they see their father with such an attitude towards death and dying. When he had to go to confession, he called for the priest himself. We have a chaplain in the hospital who's available for the sacraments for our patients. It's a free service of the chaplaincy office. So they know that their father is ready. That gives them a lot of peace and serenity even if they're crying.

Avic: Do you encounter patients who are denying that they're going to die, you really try to help them, give them all the facts of the case but they are on denial. What do you do with them?

Liza: Yes I had a patient like that maybe just a month ago and I was telling everyone how he made his family suffer and how he made the medical team suffer because we're a multi-disciplinary team of doctors and all of us are saying the same thing- that there's no way we'll be able to pull you out of this and that we were trying to help you prepare for the eventuality of death. But he never accepted the fact that he was dying. And when I would probe how come   you'd rather not meet death head-on, he said because I cannot give up. And his reasoning is that if God is not giving up on me then I cannot give up on myself either. I was making him realize that well maybe you should not look on God as necessarily wanting you to live. I mean I haven't seen him pray so how easy is it to know that what he's saying as God's will for him is more of what is his will for himself. So that's why I find that people who have a very strong faith and a strong connection with the divine find death and dying a relatively acceptable reality in our life. So in this particular patient I felt like it was a sad death for him and the family because they saw the patient wanting to live and they were not able to give him that wish of continuing to live. The family is sad about the whole thing, so he and his family never really reached acceptance.

Avic: Do you have post-death care for the family who's left behind, who are still suffering?

Liza: If they want, we always tell them that since they know where to find us that we can actually offer them grief and bereavement. But in the Filipino culture it's not common practice to seek anything psychological or even anything psychiatric. It doesn't sit well on the Filipinos as they say I can handle this myself.

 Avic: In all these cases, do you find that a person's deep value of life is related with the preparedness to die, like a person who finds meaning in life will also find meaning in death?

Liza: Definitely I would say they're even directly proportional. A person who's living life to the full even if it's the same old routine day in and day out, they feel fulfilled. And their dreams are not even like extraordinary. I mean it's the ordinary dream for example of a homemaker of a father of a simple family, or of a student who just wants to finish college maybe because I do have young patients know who don't manage to finish their studies. If their attitude towards life has always been gratitude -I'm just glad that God gave me life to begin with, that I have my loving family supporting me, that I enjoyed my life all this time even if there had been real challenges and difficulties- then when they are diagnosed with a serious illness that is potentially life-threatening that same attitude holds. But for people who have never ever found meaning they don't know what to do with their life, it's as if life is passing them by. Then when the reality of death hits them even that they don't know what to do with the whole idea of dying. They never really lived I would say they were just simply existing and seemingly waiting for life to hand them something that they don't even want. And they would seemingly just end their life and you might say there's no legacy to the people they care about and even to society to talk about among these kinds of patients.

Avic: And does it apply also to not only to the dying but to the family when you see that each family member has more awareness of life's meaning they're more prepared for their loved one to die?
Liza: Yes, and the advantage is if the family members are also people with a purpose, then they are able to provide the necessary support for the sick person. For example, we're talking about the parents being alive and it's the children who are sick terminally ill then they have passed on that way of looking at life to the child who's now terminally ill and therefore you might say that with that family background and even value system that they got from their parents then that's their attitude towards their death. We in family medicine we always say that certain illnesses are brought about by the family but at the same time certain illnesses are relieved and supported by their families. It works both ways so the positive effect and the negative effect of the family will be there when a patient gets sick.

Avic: Since we have talked about the dying person and the family, do you find also some effects on doctors who probably didn't know about palliative care but somehow in the process got to appreciate those things?

Liza: When we first started palliative care for example in the hospital where I'm currently working, the attitude towards death and dying is one of doing everything possible to make a person live. They feel like you're not a good doctor if you don't save lives. But the more they get exposed to the principles and concepts of palliative care they have adopted a more realistic approach to life to death and dying. And now they don't anymore feel so bad when we allow the natural course of illness to take place and for death to eventually happen on their patients. I would always say that as long as you are able to relieve the pain and suffering of your patients you have provided very good care medical care and that makes you a good doctor. In fact it's the patients themselves who tell us what kind of care they want and what makes for a good death for them. You'll be very surprised though there was a study done by our friend Dr. Gemma Balein at UP-PGH among cancer patients who are terminally ill. She interviewed the patients, the family and the doctors about how they defined a good death. The answers of the patients and the families are more or less the same but the answers of the doctors are different. For example as far as the doctors are concerned what they consider a good death for their patients would be everything medical -I have already done everything possible to prolong my patients life, I have relieved them of their distressing symptoms. But the answer of the patient and the family is just one: a good death for them is to be able to find their peace with God, to make their peace with God. And family members got that right, yeah that's all the dying patient wants to make their peace with God. So if the doctors didn't know that then they would not even offer spiritual care. for example one of the things that that I find very fulfilling is that wherever we have started the palliative care education and training program in whatever hospitals we're working, even with the medical students, the residents and the fellows it's almost like second nature to them that when they see that a patient might die anytime they would already inform me that they have already called the chaplain. So before I would always remind them have you called the chaplain, have you got a chaplain. I forgot doc and they will call the chaplain but now at the level of the ER they are already calling the chaplain. And our chaplain is more than happy to accommodate the request of the patients for spiritual care.

Avic: Does it apply to all religions?

Liza: Yes definitely because we do have some patients who are non-Catholics or some Catholics have shifted religions. I would explain that even if they have chosen another religion in reality they've been baptized in the Catholic church and if they want they can actually receive the sacraments. But some of them may prefer to be seen by their pastors and that's okay. We also have some patients who are Muslims so they have their own rites that they observe then they say okay fine you can also receive spiritual care from whoever you wish to get them from.

Avic: And in all of this, was there any time that you really thought suffering is too much for them? I mean with all the patients that you have counseled, that you have taken care of, did you reach a point where you also complained that how come suffering is too much, there's so much pain?

Liza: Not really, you might say it's very clear to me that pain and suffering will always be part and parcel of a person's life. I find it unrealistic for us not to have some form of pain and suffering at any point in our life and since we know that if there's anything sure about life it's the fact that we're going to die then the dying process will bring some pain and suffering. So our role precisely is to somehow minimize the suffering so that we they are able to function and to continue with their work or with their studies for as long as they could to live life as normally as possible given the limitations of their illness. Patients and families will come complain about too much suffering if they have not yet been referred to palliative care but precisely that's our role you might say. Yeah there's still some limitations to how much we can minimize their pain and suffering. But if the medical medicines will not be able to do that effectively enough the accompanying psychosocial support and spiritual care takes care of the rest so that they are able to accept that it's not possible to bring down the pain score to zero. But at least they will know how to make use of that pain to be a better person you might say and to actually be able to console their families even if they themselves are sick.

Avic: I'm curious was there a point in time that while you are counseling family or even the dying person your emotions showed? Did you even show yourself crying also when the family is crying?

Liza: The most maybe that happened to me would be to get a little teary-eyed but not actually for my tears to fall or for me to sob because depending on how long I have taken care of this patient and how much they have helped me to become a better person and a better doctor then their own death touches me in a personal way. No it's not like okay another dead person, that's it move on to the next one. But you might say I'm able to handle my emotions not because I detach myself from them but because in the end I myself find meaning in my patients pain and suffering you know and I try to communicate my own understanding of their illness to them. That's where my being ufirm believer in God in my Catholic faith has helped me because I can only give what I myself have. I'm familiar with the writings of John Paul II for example on the Christian meaning of human suffering so I also share how they can look at their illness from the point of view of uniting it with the suffering of our Lord. I have some colleagues who actually are kind of skeptical about that kind of approach but as another colleague would say nobody argues with success. If I see my patients’ burden is lifted by the consideration of the supernatural aspect of their suffering then that gives me a lot of peace and serenity. So more than just you know blocking off my emotion and making myself like a stoic it's really the whole idea that in the end they die happy and calm and at peace with God which is what they have always wanted, right? So in the end they got what they asked for.

Avic: Yes. In a sense you have somehow as I can see it brought them to another train or you have brought them to another journey. For the non-believers you can just talk about train stations and for the Catholics you have brought them to the other life prepared, right?

Liza: Correct.

Avic: But have you never been tested, really challenged by your patients with the way that you look at life and death. Do you get to question yourself seeing all your patients if all this is you are doing for them worthwhile?
Liza: I feel passionate about my chosen field meaning I always say it's a vocation in itself. Not everybody's cut out for palliative care. More than just the intellectual capacity to know a lot about terminal illnesses, the emotional, psychological and even the spiritual makeup is needed for you to be able to handle death and dying day in and day out for the rest of your life if that's your chosen field of specialization. So I never questioned my own choice of specialization. I never questioned my own perception of life and death and dying because each and every patient whom I have taken care of has have enriched me. They have made me a better person. They have made me a better doctor. Even those whose who didn't have faith and who refused to accept death and dying and somehow did not make their peace with God the way I would have wanted them to, even they helped me realize that in the end we're really free. We are free to choose whatever. I would have wanted them to choose God especially at the end of their life but if that's not what they want then I take it upon myself to pray for them. I never give up on hoping that at the last minute they'll undergo a conversion even if I may not be aware of it. And when they already died I make sure I keep them in mind when I'm attending Holy Mass so that I can pray for the eternal repose of their soul. I don't think I was adversely affected by how my patients were even if their value systems and preferences are so different from mine.

Avic: Okay very good. I know it's already five minutes to eight and you have other activities for the night. Perhaps you can end with three advices to everyone because everybody is going to die right? what would be your advice in terms of finding the meaning of both life and death?

Liza: When I talk to young people who don't seem to know yet what they want from life I always tell them that every day is a gift and they should have the same attitude of being amazed at what the gift might contain. Enjoy it while it lasts because in the end, really nothing lasts forever. Have that attitude of gratitude for your life, for your health. During the pandemic whenever somebody's celebrating a birthday and I ask them so what are you wishing for and they would say good health, I would say just like that just health nothing else? They would say dra in this time in the history of humanity health is so important because so many people have died from Covid and they've suffered from Covid. And that's really true right so we need that attitude of gratitude.

And then have that attitude of trying to make a difference in your life even if it's just nothing really major or you know like it won't hit the news but when you look back on your life even if it's just a short life you might ask- did I somehow have made an impact on the people who are important to me? Have I made them happy in my own little way? Have I loved them the way they would have wanted to be loved? Make the most of your life.  That's the second point so that when it when death comes and then you say okay it’s the end, it's been a good life history. All films have endings and so my own life has come to an end as well.

And then the third, aside from never leaving for tomorrow what you can do today, is to realize that in as much as you and I will die, the people who are important to us will also die and therefore even if we may not be the sick person it's our family members our friends who are suffering from an illness, make sure that there will be no regrets so that if and when they're finally taken away from us we would say that I have tried my best to make that person happy. I've shown her how much I love her, how much she means to me. If for example the person suddenly met an accident you saw her today and then later she's not there anymore, then you might say even if you're heartbroken at suddenly losing a person you know that whatever little time you had with that person all of that was meaningful. It was a real relationship where you invested your affection, your time and you help each other to become a better person.

So life and death is not so scary as long as you have the right attitude of gratitude and wanting to make the best of it even if it's the most ordinary life you can do.

Avic: Thank you very much really you must be the most prepared person for me in terms of death because you have such strong convictions about life and about death. And I really think everyone who will listen to this live stream would really get a lot from your example and from your beliefs, from your conviction so thank you very much Liza and I hope you have a wonderful dinner.