The Pre-Med Hospice Volunteer Program
coordinated by the
Home Care Network, Hospice and Palliative Care,
and the Bryn Mawr Presbyterian Church under a grant from Athena Institute for Women's Wellness. Learn more about the program's history (click here)
At the end of each session, the program graduates are asked to submit their 'reflections' in essays… we hope you find reading their feedback as rewarding as their own experiences, please scroll down for each student's full story.
From AH --Bryn Mawr Student
I open this reflection with my verbatim, which went unshared at our last hospice meeting. This dialogue transpired during my first visit with “Mr. Johnson,” a nonagenarian resident in a long-term care facility. When we met, his contractured body lay inertly in a reclining chair by the nurses' station, but his gentle smile still welcomed my company. I sat beside him in a wayward wheelchair, and together, we began the measured waltz of introduction. After exchanging names, I asked about his family.
Mr. Johnson: I had eight children -
Mr. Johnson: - but one son died of ALS.
Me: Oh, sir, that must have been difficult.
Mr. Johnson: Yes, it was. Do you know what ALS is?
Me: Yes, sir. Amyotrophic lateral sclerosis, I think.
Mr. Johnson: Yes…But he still comes to me.
Me: He does?
Mr. Johnson: He comes to me while I sleep.
Me: That must be comforting.
Mr. Johnson: It is.
Mr. Johnson's fatigue cut our conversation short, but unvoiced questions remained knotted in my head. I longed to ask him, gently and reverently, about the nocturnal reunions with his son. “Does your son visit often? Does he take you places or give you messages or hug you tightly? Would you like to follow him? Are you ready for that journey?”
When I returned for our next visit, Mr. Johnson's journey was imminent. He lay unresponsive in bed, curled rigidly in a ball, breathing raggedly through a collection of secretions in his throat. As Mr. Johnson prepared to leave the world, a gaggle of people entered the room to visit his hen-pecked roommate. The room, once laden with quiet anticipation, grew loud and tense as the crowd bickered from behind the curtain.
I sat at the foot of Mr. Johnson's bed, my hand on one of his stiffened knees, silently pleading that the clamor would not impede his journey. Although it was wishful thinking, I hoped that Mr. Johnson was as oblivious to the noise as the crowd was to his impending death. As I stood to leave, I wondered if Mr. Johnson's son came to greet him, drowning out the din with a joyful “Welcome home!”
I have grown to think of my hospice work as an act of accompaniment in which I always play the visiting son. I have found that many people deny or ignore the inevitability of death, but I am honored and expected to acknowledge its arrival. Every visit with my patients is an opportunity to celebrate their lives and admire their experiences, but as I watch their lined faces and envision their memories, I remember that our relationships will always conclude when they take their final breaths.
When I see a lifeless bird on the sidewalk or crush a spider beneath my shoe, I can accept the certainty and permanence of their deaths. But human death seems less natural, as though decades of memories and experiences cannot evaporate when the heart ceases to beat. I understand why healthcare providers, families, and patients feel compelled to implement or accept drastic, life-sustaining treatments. The alternative - withholding curative medical care - means dying, and dying can seem alien and unwelcoming.
My job as a hospice volunteer, and perhaps as a hopeful future physician, is to recognize the humanity of dying. Although the process may be frightening or sad, dying can be an uplifting opportunity, a time to grow, to deepen connections with loved ones, and to share memories. In this way, I remember my first conversation with Mr. Johnson, and though his life no longer exists tangibly, I carry his memories with me. *** end of AH essay
From JW --Haverford Student
The Hospice Volunteer program has been an invaluable tool in shaping my confidence in addressing the issues of death and dying in both a medical and non-medical environment. Death scares me. It always has and I do not think that this program has changed that. I do not think that being a doctor will change that. But this experience has taught me that I can deal with issues of death and dying in a sensitive and powerful way. I have learned that I can make an impact in someone's life-whether that be now as a volunteer or later in life as a doctor, and can do that without letting a fear of death stand in the way.
Previous to starting this program, I was apprehensive about my ability to come into a situation surrounding death and feel confident that my efforts were needed, and were making a difference to a family dealing with something as difficult as death. I found myself asking the question, “Why would someone want a complete stranger coming into their space, trying to distract them from the overwhelming presence of death?” The more I visit patients, however, the more I realize that my care and compassion for these patients is enough to bridge whatever gap may have existed between us, to mend whatever divide death may have created. I care for the patients that I see; I care about their wellbeing, and I care that they do not feel alone in their final days. I am coming to realize that this will always be one of the most powerful tools I have as a doctor, and feel extremely fortunate to have the opportunity to hone in on this so early in my life, and in my journey towards medicine.
I continue to ask myself questions as I progress through this program about how I will handle experiences with death when I will not have the time to completely devote myself to each patient and properly mourn their death. I continue to think about my experiences with losing patients and how I can take the ways that I have mourned their deaths to find the most effective way that I can say my peace to a patient who has passed, and then continue on to help the next patient who will need my attention. I do not think that as a doctor I will be able to do my job properly if I mourn every death I am exposed to for too long. However, I know that I would not be able to do my job everyday to the best of my ability if I tried to ignore the death I was seeing.
I feel very fortunate to be aware of these concerns and tribulations of medical education and practice now. I am completely confident that in the future as a fully practicing doctor, that I will look back and feel especially grateful to have had this opportunity to both help a very special and often ignored group of people in society, and to learn more about myself and my potential to deal the difficulties of death.
This program is very well designed, and I appreciate the time and effort that has went into the planning and the time that went into the training sessions. They were very well planned and the manual continues to be an invaluable tool for me as I continue with hospice volunteering. It could be helpful to provide opportunities for participants to experience death and dying more specifically in a hospital setting. I have more than enjoyed visiting patients in their homes, but I think seeing patients in a hospital and seeing how decisions surrounding death are made, could be a very enlightening experience for the pre-medical participants.
I would love to be a mentor and provide support to students as this program continues, particularly once I am in medical school. Fostering mentorship through this program could be a very powerful way to build bonds between students compassionate about death and dying in medicine. *** end of JW essay
From HH --Bryn Mawr Student
Back in September, 2011, a girl with a great dream of becoming of a doctor decided to apply for Tri-co Hospice Program hoping to not only learn about the palliative care, but also to push herself out of her comfort zone and be confronted by death, which will help her to become a more well-rounded and caring doctor in the future.
Along the nine months of journey, so many people have asked me why I was doing this. They have been very concerned about me because it, indeed, is such an overwhelming experience: witnessing my patient's health deteriorating, watching her dying. However, if anyone asks me if I regret or have ever regretted doing this, I can immediately and confidently answer no without a second thought because through this program I have met so many amazing people. If I had not done this, I would have never met my wonderful patient and her husband.
I learned so much past nine months; I gained much more than what I could ever ask for. Although I have volunteered at hospitals for many years, this was my first time ever building any intimate relationship with a patient and the family. Through my valuable time with them, I learned what it really means to be caring and patient, appreciating life and the time of being with someone who I love. I learned that there is much more to medicine than just science, that caring for someone is not just about extending the life of beloved ones but really is to listen carefully with an open heart and think about what the best choice is for those who are at the end of their lives.
As a volunteer, there were some times I felt insignificant and not helpful at all to the patient and caregiver because all I could do was sitting next to my patient, either talking or watching her favorite Soap Opera together. It was frustrating that I couldn't do anything more than that because I am not a trained medical professional. However, they always appreciated me for taking a few hours every week to see them. I am very thankful for them for having me every week and sharing their stories with me. Through this Tri-co Hospice Program, I learned what it truly means to help and serve others in need, strengthening my desire to become a doctor who is not only efficient and culturally sensitive, but one who empathizes with patients.
Thank you so much for giving me such a wonderful and unforgettable memory! I really hope that I can come back next year and continue with my relationship with my current patient and her family.
*** end of HH essay
From PD --Haverford Student
'Perhaps the whole root of our trouble, the human trouble, is that we will sacrifice all the beauty of our lives, will imprison ourselves…in order to deny the fact of death, which is the only fact we have. It seems to me that one ought to rejoice in the fact of death- ought to decide, indeed, to earn one's death by confronting with passion the conundrum of life.'
-James Baldwin, The Fire Next Time
When I read these beautiful words, I could not think of a more perfect libretto to describe one of my patients. Mr. B, as he's always asked me to call him, has lived a very long life. Death, regardless of how desperate I once was to never see it come for Mr. B, will inevitably take him, perhaps even to a better place. I am no longer so anxious about his eventual passing. When I first got to know him, he seemed like the wisest person I'd ever meet. Now, several months into our friendship, I know he is probably the wisest person I've ever met; however, he has become far less intimidating over time. We discuss Hindu poetry, American politics, Caribbean food, the talented Morgan Freeman, and I'm pretty sure he once told me the meaning of life, but I was so astonished that I've forgotten it entirely.
In every conversation I've had with Mr. B, he was so invested in the mutual sharing of knowledge that I couldn't help feel special about spending time with him. Mr. B makes every moment matter.
One day on my way back to school, I thought that perhaps this was because he had so few moments left. I brought this up to him the next week; he said that he began to notice his devotion to every moment in life when the life of his son ended tragically. This tragic event had sparked a flame within. I think Mr. B might have been scared of confronting his own death in light of his son's. So, he made the decision to confront the moments left in his life. This does not make him immune to pain or nostalgia. In fact, it seems to amplify those feelings. But he embraces that kind of emotional acuity.
I've always been told that to be a doctor, I had to compartmentalize and put my emotions away. I think some part of me always knew that I would be incapable of living my life this way. Seeing Mr. B every week has helped me see the balance that one can achieve between empathy and support as a caregiver. I'm not saying that I have nothing more to learn about life and death and the emotions that come with both. However, I have a greater appreciation for the work and effort that goes into understanding them. These are not questions that have to be answered immediately. In fact, taking my time, and appreciating each moment will benefit me immensely.
Like Baldwin said in the quote I began with, it is imperative to 'confront the conundrum of life' with passion. This takes time and focus. I guess that kind focus speaks to the spirit of noticing what I notice. I recently took a trip off campus to a mosque. As my friend and I walked to the site, we passed a residential area. As I was walking, I became almost painfully aware of how much life and living was going on in those streets. Every house with a family; every family with a story. I tried to imagine what those stories might be, and some were probably similar to my family. But somehow, the fact that they existed, and the fact that I had to suddenly come to that realization was enough to shock me and make me take pause. I wonder if they thought of me and my own story as I walked on their paved road?
*** end of PD essay
From YZ --Bryn Mawr Student
Standing at the bright courtyard in Cathedral Village probably for the last time this semester, I knew the experience of being hospice volunteer has changed me in many ways.
The sophomore year for me has been an adventure filled with mixed feelings. So much has changed and so much is about to. Hospice program has been a catalyst for me all the way through. I have never worked in a real medical professional setting. This program really gives me a new perspective to examine my interest in the field of medicine and direct exposure to gain more insight of health care system. All these experiences really help me to make plans for my future.
This years' working experience with hospice and palliative care give many unforgettable memories. One of the most unforgettable occasion happened during my first volunteer visit. When I tried to leave the room, she suddenly squeezed my hand and whispered “Don't leave me alone.” I suddenly realized the importance of hospice volunteer, to bring comfort and accompany to those old people. No matter how little things I did meant a lot to them. To bring them a happy afternoon, all I have to do might just be sitting there and hold their hands.
At the end of the life stage, the physical control is not easily achieved. However, the restrains in the physical movement need more emotional and psychological attention and care. Throughout year, I learn to listen actively, think more considerably and pay attention to details. Being a caregiver, I learning to leave out my personal feelings and be whatever the patient wants you to be.
During this year, I also suffered from personal loss. It was so ironic that I said that I never experience a loss of close relatives during my lifetime during our training time last fall. The pass away of my grandfather this spring was not a surprise but still hard to accept. I still remember that very first week after hearing the news, all the memories about grandfather were flashing back when I was talking to patients. Thoughts of his un-finished wishes that I will never be able to help him realize lingered around my mind.
Honestly, I still don't think I understand the mysteries of dying, but I can look at it with more serene attitude. It stills hurts every time I go through the process and that's the core of human nature, empathy. It's an inevitable last destination of everyone's life journey. Sooner or later, everyone will arrive there. I know I have to move on and do better for the people still at this world. What we can do is to make the most of everyday life. The separation between people is hard but cannot be avoided. I started to think about future, forty years from now, what can I do for my parents. I don't have an answer yet, but I know I want to do more to help as many as possible.
After this program, I think I more determined on the road of the medicine. Especially it triggered my interest in the gerontology. I thinking taking care of the old people is a very important part of society and will become more and more important because the growing aging population pressure. At the same time, old people deserve more attention and better care. I will keep working hard to be a qualified and caring physician. *** end of YZ essay
From LS --Bryn Mawr Student
This may sound bizarre, but from this entire hospice experience, I think I learned to do less. Now, of course I don't mean that I would ignore patients or their loved ones. But when I say less, I mean that during this experience of volunteering, reflecting, interacting, and listening, I realized that I didn't have to be (nor could I be) the person who provided everything to a patient.
Now, before I make it seem as though I shirk my responsibilities as a volunteer, let me go back in time to further explain myself. Back when I volunteered for hospice at home, I wanted to be the volunteer with all the answers. I wanted to be the volunteer who could provide endless conversation and comfort to patients. I wanted to do everything 100%. If I left hospice any day not doing this, I felt utterly defeated and useless. After these few months however, I've come to realize that caring for someone is not a one-woman struggle, nor does it mean that the more you can fit in, the better the volunteer you are.
My mind always wanders to an exercise we did together during orientation: listening. I was paired up with my friend Summer and we were told to simply listen to one another. Of course, I thought that I had had this mastered-I tenderly listened to my friends when they were sad, I listened to my professors, and I listened to my peers. I understood how to listen and solve a problem, but I didn't understand the significance of listening at the time of occurrence.
When I would listen to my peers, I would feel crestfallen and ashamed if I couldn't come up with an answer. My world consisted of problem-resolve. In my rationale, what good to your friends was listening if you couldn't do anything to solve their problems? I always tried my best to come up with an all-encompassing solution. I wanted to nip the problem in the bud and make this person happy. If I couldn't do that, what use was I as a friend? It got to the point in my life that If I had a problem I couldn't fix, I didn't tell anyone. I've lived much of my life with this philosophy: if there is nothing to be done about something, I don't vex, but instead move on. In some cases, I think this is a very healthy way to feel. However, this philosophy has no place in the act of listening.
I was hesitant at first, but I began to tell Summer about my father who constantly told me that he wished I had applied to more prestigious schools. Instantly in my mind, a flag popped up, “Laura, this is stupid. There's nothing Summer can do about this.” But I continued. I realized, that it all started falling out of my mouth. It was the first time I had ever taken those emotions out of my head and made them materialize outside of me. I wanted to do nothing more but jump out of my seat and shout, “my father is not proud of me and that is not okay” and, strangely, after I finished, I felt immensely better. I didn't mind that Summer couldn't fix my problem-I didn't expect her to. But the fact that she was there to listen to me-for me to entertain the idea that someone was there just to allow me to feel how I wanted to feel, someone to be a warm presence rather than a pedantic instructor was something I had never experienced before. In a weird way,I felt like Summer had done more for me without saying a word than if she had offered advice, emphatic nodding, and tips to reconcile with my dad.
In 2007 I remember lying in bed and listening to the radio. I've since forgotten who said it, but I remember slowly falling asleep to an interview where the person being interviewed said, “listening to someone is the kindest thing you can do. And I mean really listening, truly listening.” I didn't understand it then, but when I think about it now, I feel that maybe I understand it more.
Being genuine and present with a patient, even if this means that you don't necessarily have an answer to their questions, is much more important than trying to entertain them. I realize now that hospice patients feel an astronomical range of emotions. Sometimes these emotions and feelings are extremely uncomfortable and many times these emotions can only be completely understood by personal experience. However, it does no justice to a patient if the patient wants to talk about death and the volunteer tries to change the subject to talk about anything else. I often have to think to remind myself of how cathartic just talking to someone can be.
As the program comes to a close, I see now that hospice is not the hero with a long cape who rushes in, destroys the fiery asteroid, and saves the day. Hospice is the warm, unwavering light of a fire to warm you when you need it. Hospice is the reliable and humble lamppost that illuminates your map just well enough that you can take comfort in where you are going.
It may sound a little mawkish, but this experience has taught me how to really, truly listen. It has taught me to think about the patient, rather than think about what I should be doing for the patient as a “good” volunteer.
There are times, of course, when this is still difficult. I still become tongue tied and sheepish when patients ask me about their pending fate. I still want to evade questions about death and I still wonder if I'm doing these people any good. My main patient that I have been visiting has expressed that more than anything she wants to die. She wants to go home. However, she is still alive. I wonder frequently why she is holding on when she says she is so ready to go. However, now, I no longer feel guilty that I don't have the answers for her. Instead, I know that I can and will always try to be a presence in her life and death when she needs me. *** end of LS essay
From LC --Bryn Mawr Student
As someone interested in caring for patients at the end of their lives, I expected hospice volunteering to provide invaluable experience in having difficult conversations with patients-about death, about maintaining happiness in the absence of hope, and (potentially) about their physical and emotional pain. But though these topics did arise occasionally, they were alluded to only briefly and often passed without careful review or reflection. It was as though these thoughts were so obvious and apparent in their everyday lives that speaking about them directly was almost beside the point. Their bodies and their short remarks seemed to tell me, “Yes, I am going to die; yes, I will be alright; and no, this isn't easy, but it is what it is.” I don't doubt that I might have penetrated deeper into their thoughts on these significant issues, but I felt incapable of approaching the task appropriately. Furthermore, I was unconvinced of its benefit when the patients were understandably uninterested in dwelling on their challenges.
Instead, I spent most of my time listening and asking questions about whatever I was told. Each patient was different, not only in personality and interests, but in living situation and need. With one woman I discussed gardening, holiday decorations, dollhouse making, poetry, and child rearing; she didn't want to discuss her cancer and appreciated just having the company. When I arrived at the home of the second patient, I found him asleep and he drifted in and out of slumber for the proceeding two hours while I spoke with his daughter instead who had been living with her father and caring for him for several weeks; she appreciated describing the story of his illness and her life beforehand. The third patient was confused and distressed, so I held her hand and offered reassurance; she was glad to be relieved of her anxiety, if only temporarily. The last patient was well cared for by her daughter and was in fairly good health, but couldn't attend church due to difficulty moving, so I read her the Bible and prayed with her, giving her daughter the opportunity to attend church herself.
In some ways, these visits were perfectly right and good in that they offered to each patient some small amount of happiness. But in other ways they felt trivial and insubstantial. When one caregiver expressed her uncertainty about the current health of her father (the patient), wondering if the doctor had accurately assessed his needs and prescribed appropriate medications, I was unable to offer any helpful information. And with such short-term visits, I never developed a lasting connection with patients before they passed.
Somehow my prior conception of hospice work as emotionally and spiritually rich-and my corresponding assumption that I would have significant, unforgettable experiences that would inevitably inform my future work as a physician-was never fully realized, and I often left visits feeling oddly detached from the people I so longed to know and help.
How do you connect with someone? How do you really get to know someone? What does it mean to help someone? I've witnessed doctors meet with patients for a mere 15 minutes, but leave them feeling empowered and understood. I've acted based on what felt normal and right, and been surprised to hear words of thanks later on. And I've tried to help, only to make matters worse. I'm still learning how to approach people-how to meet them where they are, to find words that ring true for them, and to do so even with people I initially struggle to understand. *** end of LC essay
From MC --Bryn Mawr Student
I began volunteering at Cathedral Village. I felt helpless when I visited with a patient who has dementia. It was difficult to understand what she was saying and what she needed. When she became agitated and tried to get out of her chair I had a difficult time figuring out what she needed or how to help her. She continued to say help but I had to wait for a nurse to come and help her and they did not seem to be in much of a hurry to help this woman to the bathroom. After she continued to try and get out of her chair and would get into arguments with her visions of her mother, father, or children. While I was away I heard a nurse yelling at the resident that she was a liar. I felt that by yelling at the resident the nurse was adding to the resident's stress which did not seem good toward the resident health.
After the experience I continued to be concerned with the environment that the patient was living in and how it was affecting her state of mind. I know that dementia cannot be cured but I know that everyone deserves to be respected and cared for and I had the feeling that some of the nurses were not as concerned for the patients mental care. While speaking with this resident there were a few brief moments of recognition and I knew that I should continue to be conscious of what I was saying. At the moment I know that as a doctor I will strive to be conscious of what I am telling patients or how I speak to them so that they know I respect them and the health concerns they bring to me.
For the next seven weeks I switched to making house visits. Every time I visited one house I had a new quote, conversation, advice to think about. The one piece of advice that I will always remember is she told me to always figure out what's wrong with a patient. All I could tell her was that I could try. While taking classes at Bryn Mawr I continue to learn about how much we still have to understand about the human body and how many times the healing of a person can surprise everyone. But it's the mystery of the human body that drives my need to more fully understand it. Throughout my years in school and working as a doctor I will always remember this woman, her advice, and her pride for me for my career choice.
I enjoyed the readings and the monthly meetings. I especially appreciated all of the people who came to talk to us. They all had their own experiences and I enjoyed hearing about their perspectives on death. I especially enjoyed hearing about the labyrinth and its symbolism of life's journey in not just entering the labyrinth but exiting. Mostly when I think about being a doctor I look more at the scientific aspect of taking care of the a person. From the talk about the labyrinth and from my visits I know that not only is the science aspect of health important but also the spirit. I have enjoyed my visits and know that I don't want to be a doctor that tries to meet with as many patients as possible in the shortest amount of time. I want to get to know my patients and be able to help them feel good emotionally and physically.
The program was well organized and flexible with my schedule which was wonderful. I only had trouble with transportation. The amount of time it took to get to my destination or back was longer than the time I spent with the patient.*** end of MC essay
From MY --Bryn Mawr Student
The pre-med hospice program has been an incredible experience for me. The trainings were absolutely spectacular; I remember leaving each session so grateful for the conversations I had been a part of. There were definitely some difficulties scheduling visits with patients because of my insane schedule and communication issues, but the few interactions I did have with patients were incredibly valuable. I've learned so much about myself and what kind of person and caregiver I want to be through the program, and I'm sure that I will carry many of my experiences with me throughout my life.
I feel much more aware of the rewards and challenges of being a compassionate caregiver, especially from the point of view of a medical professional. I feel better equipped to deal with not only the pain and sickness of future patients, but also with the inevitable personal losses that I will encounter throughout my life. The trainings truly opened my eyes to the realities of working as part of a healthcare team, and have fostered in me such a respect for those few people who are able to spend their professional lives so intimately involved in the death of others. Their abilities to listen and empathize are incredibly inspiring, and this program has given me more confidence that I perhaps have the strength to one day be one of these people.
The main concern that has lingered with me throughout the program, however, has been whether I will be able to live up to the kind of doctor I want to be. In the world of modern medicine that is dictated by insurance companies and molded around economic and liability concerns, is it possible to give patients all of the support that I want to give them? It's been incredible to understand patients through volunteering, but I worry that from the position of a doctor I won't be able to practice medicine with all of the warmth and kindness that we've discussed in our trainings. I'm scared that I'm not powerful enough to be able to make a difference in a broken system and that over time my idealized views will be broken down.
This fear, though, is definitely not stopping me from still wanting to pursue medicine. I look forward to continuing to volunteer (I'll be here over the summer so will hopefully be able to continue with hospice volunteering), and I'm excited to explore other areas of medicine, as well. *** end of MY essay
From SH --Bryn Mawr Student
Hospice Reflection Hospice Reflection Paper 4/15/12
Time Well Spent: My Hospice Experience
I applied to be a hospice volunteer to gain experience with the end-of-life process, so I would be better prepared to negotiate this time as a doctor. I felt that I lacked experience with death and that I would be able to more effectively empathize with terminal patients and understand their needs having spent time as a hospice volunteer. Rather than having a distant effect on my future career as a doctor, I feel that this experience has changed my perspective on everyday life in a way that revealed the importance of hospice care.
Seeing the sacrifices made by caregivers for their loved ones on hospice, without any thought to their own needs, touched and amazed me. People who are old enough to deserve total relaxation spend their days waiting on their spouses, parents, siblings, hand and foot, and wouldn't want it any other way. This incredible devotion made me consider what is valuable in my life and what I want to spend my time doing.
Before volunteering, death was something very remote to me. I never had a personal experience with the loss of a close family member or friend. I didn't feel that the possibility that someone I loved could die was real, despite having grandparents who are all in their late 80s or early 90s. I saw my first hospice patient four or five times, spending a couple of hours with him weekly. I was surprised by how comfortable I felt with him. I quickly realized what a fun and kind person he was, and how much we had in common. I looked forward to my visits with him, and despite knowing that he was on hospice care, again the possibility of death seemed far-fetched and imaginary.
After returning from a school break, I tried confirming a time for me to see this patient again and found out that he had passed away the night before. I was sad at the news, but didn't have a strong emotional response. For a couple of weeks I struggled with my seeming lack of grief, focusing only on the obligation I felt to have the socially-accepted response to death, and feeling guilty for not having it.
After a couple of weeks of feeling this way, we had a hospice volunteer reflection meeting and I was asked to talk about my experience with patients so far. After sharing my story, the grief I had been waiting for finally hit. I realized suddenly that this amazing person with this rich, unique personality was gone, and I would never have another chance to get to know him better. I felt like I had wasted my time with the patient, unappreciative of what a privilege it is to have the opportunity to get to know someone. I started thinking, what if someone in my family or one of my friends dies?
It suddenly struck me that this was something that could really happen. I struggled with the idea that I was spending so much time doing schoolwork when all I really cared about was spending as much time as possible with everyone I love. I decided that it isn't possible to spend all of my time with those I love, but I felt a new level of appreciation and affection for everyone I interact with.
A few weeks ago my grandpa died. He was 92 and had suffered from a sudden onset of pneumonia, but made a miraculous recovery from the verge of death. Two days later his heart gave out, presumably from the exhaustion resulting from his recovery. At my grandpa's funeral I saw him for the first time in over a year. I couldn't stop crying thinking about how I would never hear his hilarious stories again or talk to him and be continually surprised at how much fun I had with him, as seemed to happen every time we interacted.
I think that the recognition of death as a lost opportunity to better know and appreciate a beautiful person which I achieved when my hospice patient died allowed me to better understand the source of grief at the loss of my grandpa. In this way, hospice volunteering has altered my understanding and expectations of death. I have a greater appreciation for the time I get to spend with the wonderful people around me and will be able to use this appreciation to empathize with patients and the families of patients facing death. I also feel that it will be hard to make decisions to stop futile treatments of terminal patients, knowing that I am taking away a loved one from a family.
However, my volunteering experience and grandfather's death have shown me the beauty and exigency of time spent in one's home and with one's family, and knowing that hospice care allows patients to maximize this valuable time will allow me to make that difficult decision when appropriate.*** end of SH essay
From RF--Swarthmore Student
The reason that I decided to apply and then join the pre-med hospice volunteer program was because I wanted to better prepare myself to be a doctor. It seemed fairly simple. To me there seems to be a list of sorts, of things that I need to do before I'm able to trust myself, and have others trust me with another's life and well-being.
One of the most daunting things on this list was to learn to deal with death. I wasn't sure initially what this would entail, but I knew that it needed to be done. I've always had a, while not debilitating, somewhat substantial fear of death. I felt that, in my constant exploration to make sure that the medical profession is the right one for me, I needed to discover if being near death, and constantly reminded of death would be something that I could deal with.
I was surprised then, after visiting my first patient to realize that the end of life is not always about death. I realized that the end of life is such a personal and individual experience that it's hard to generalize into one word, such as, “dying” and try to set out to face that word as a single entity.
The less conscious part of what I learned through the hospice volunteer program was the absolute importance of catering to needs of individuals. After seeing a few patients I came to learn what different services they wanted me to provide for them, and the different services I was able to provide for them. Some patients wanted me to perform purely household tasks. These were concrete and purposeful. I had instructions and I was able to understand clearly what they wanted from me. Others only wanted company. The difference between the two extremes was huge and led me to recognize that different people want different things, especially at the end of their life.
I think that this relates directly to how I want to provide care to patients when I become a physician. I want to be able to recognize that each person deserves a full evaluation (not just medical, but also personal) so that I can understand what he or she wants from me.
I've learned from hospice that I can't be a single doctor. I can have an arsenal of skills and strategies, but I must pick which of those are necessary and relevant for each person that I care for. Some people will want a doctor who is incredibly immersed in their lives. Those patients will want a doctor to ask personal questions and to get into conversations that reach beyond physical health. Others won't want this. Some people will only want a doctor to tend to medicine, which is absolutely fine.
As a doctor I won't choose whom I serve, but only how I serve them. The volunteer program has taught me that there can't be a single correct method, and I think that realization is invaluable.
On a final note, I would like to say how much I enjoyed the program this year. I am happy to say that I felt as though I understand death more. Not to say that I have completely come to terms with death and dying, but I am now not scared to explore it as I was before. I think I learned a lot about serving people and about recognizing where a person is in their life, with their own health.
Thanks so much for a great year!*** end of RF essay
From EC --Swarthmore Student
I came into the hospice program knowing that I wanted to be a doctor- to have the capacity to be able to “help someone”. However, I had no conception of what “help” would entail, other than ensuring the wellbeing and continued health of my would-be patients. This program has shown me that the role of a doctor extends much further than I would have anticipated, and has demonstrated to me the critical importance of health in the quality of the life we live and ultimately, the satisfaction and meaning we can derive from it.
My latest patient, who I will call Mr. A, has taught me a lot about the transitions that occur with dying. Mr. A's situation made me realize that our capacity and potential to live life- do the things we love, meet the people we love, travel to the places we love- is dictated entirely by our state of health. Mr. A's condition brought him from a fiercely independent, well-established, and athletic man to a more vulnerable, dependent state. While his loved ones still continuously visit him, he has expressed to me the hatred he has for his condition and his reliance upon others for things he used to pride himself on being able to do.
I think the thing that I noticed the most with Mr. A is what he used to be capable of before his illness occurred. This highlighted what “help” in a healthcare context could accomplish. In an ideal world, “helping” Mr. A would have been a preventative care regimen or developing an effective drug to combat his condition. Indeed, while we were sorting his mail, I saw that he had visited the Mayo Clinic several times in search of more information and a potential cure.
Volunteering with Mr. A showed me that his recovery would also result in the return of his personality and self that constituted his former identity- things that made him happy with his life, happy with himself, and brought meaning. There are certain things that a diagnosis cannot begin to cover, and volunteering with Mr. A has shown me the impact a doctor can have. I think I didn't comprehend the full meaning of “improved quality of life” before- I now believe it can be extrapolated to a reclamation of self, identity, and meaning.
On the other hand however, I have also garnered from the readings and training sessions that dying is ultimately a process of loss and learning to accept that loss. I know that Mr. A is reluctant to accept his condition, and my thoughts about him are formed more from the perspective of an individual whose time has not necessarily come yet and could enjoy many more years of a good life provided that medicine had the capacity to effectively treat their condition.
However, I know now that I should be mindful and always vigilant for a patient searching for the “good death”- a death with dignity. While I had a brief visit with another patient, I think he was able to achieve this- being able to pass in the comfort of his own home, surrounded by his family, and only with the minimal healthcare infrastructure required. I know that as a doctor, I need to learn the distinction between when I should stand my ground and fight for a man like Mr. A if the current medicine allows for it, or accept that nature's course is inevitable and I should adjust my regimen instead to provide my patient with as much dignity in their passage as possible.
I anticipate that one of the many challenges I will face as a doctor is learning the point at which I need to stop aggressively fighting for a patient and instead concede that I have reached the limitations of medicine, and in some ways, what one human can do for another. I guess in some ways I still question whether I would have placed Mr. A on hospice if the proper treatment existed and if I were his care provider.
However, I believe that the training, talks, and experiences I have had with hospice have equipped and prepared me well so that I may recognize this critical juncture and I will let my patients live well, whether that be on the road to recovery or on the road to the beyond.*** end of RF essay
For More Details on the Hospice Program click here
*Athena Institute previously awarded a hospice research grant to the Ohio Presbyterian Church in 2006.