When looking back to my childhood days I notice that death was always next to me, starting with a classmate suffering from cancer. One day she did not come to school. We were told that she was very sick and I wanted to visit her, but was not allowed. As a child I did not understand why I was not allowed to visit her. Suddenly, she had disappeared. Over the next few years, I had to learn that death was always near, as two classmates committed suicide and another one came back from holiday with a serious infection and died. I began to fear this being which takes away people with whom I had shared some parts of my life. No announcement and suddenly they were gone. Like many of us I tried to avoid thinking about death.
Several years later, the topic popped up again, silently, but with insistence. Nothing had happened, I just had a little voice in my head telling me that someone who is facing a terminal illness and who is at the end of his life, should not be alone. So I started a two-year training in which I learned to accompany people suffering from a severe illness or to support people in grief. During this training I noticed that I was interested in two things: the last weeks of a person time on Earth and the necessity to bring the topic of dying back to the table in order to help us both lose the fear of death, or at least most of it. After listening to a speech by a German Professor in Palliative Care I realized that this is what I was supposed to do.
In my opinion, Palliative Care is a very important part of medicine. You see the human being as a whole, you see their needs and you do not try to do everything to keep the person alive. Quality of life before prolongation. Sometimes less is more! Three years ago, with the fire was now burning, I started as a volunteer in one of our hospitals. Once a week, I held a little café with another volunteer. Offering food was the opener for a conversation. I did not know that this would become a path of deep learning, of ups and downs, of joy and pain.
My first day came and I was very nervous and had to take a walk before entering the ward. My heart was beating and I had a lot of questions running through my head: Will I be able to do this? Am I able to decide between compassion and suffering? How do I find the right words? Can I stand the suffering of others?
My first patient was a nice old man. Most of the time he was sleeping and he held my hand. I was glad for this start, it was easy, just to be there, knowing I did not have to do anything, I did not have to find the right words, I just had to be there, holding the hand of someone in need. Every time he awoke, he smiled at me and said “I am still there“ and I smiled back and said “yes.” He spent several weeks with us and one day he did not want to hold my hand anymore and I thought to myself “Ok, you are ready to let loose too.”
My first lesson during this time was to understand that there is no perfect age or time for dying. We had a young man of 37 in the first room and this old man at nearly 83 in the last room and between these two men there was only “WE WANT TO LIVE.” I am grateful for this first lesson, as I think it is important. We often agree that an old person is allowed to die because he or she has already had a life but we cannot stand the death of a child because this child had no chance to live a full life. Are we allowed to judge in this way? Who is telling us that because of the age of the person that they have really lived and who knows if the child has already learned a great lesson in such a short time?
During the next year I had to understand that everyone has his own way to cope with his illness and with the fact that life is running out. During my training I had to go deep into myself. I had to look at death from different perspectives. My fire was burning and I often was too afraid that my inner fire could burn the patient and I became quiet. At the beginning, my idea was to talk with people about death, to find pictures with the patient which took the fear away. I have learned that through the intense discussion of the topic I was able to conquer my own fear and I could now accept death as part of our life. And now? Only a few people start the conversation about their coming death, their concern, their life. A lot of them still deny their illness or are not able to talk about it. This lesson was painful, very painful. I could hardly bear it and it was more difficult for me than visiting a patient with a deformed head due to a tumor. I was often frustrated, and in a way, also demotivated. I did not see my role as someone just bringing coffee to the room, I wanted to help the patient to find peace with the dying process and to learn from him, his life, his regrets. One day, I realized that I was not with the patient and his needs, but was stuck in my own needs and from this moment something had to change.
I believe one of the problems of our society is being silent when someone is talking about death. The fear that someday this life will be over over is too big and we try to run away from it. In Western society we believe that we can conquer everything and have to learn that one day this life will be over, it is not a choice. “You have to leave and you can’t stay.” We have to face it. This was the lesson I should learn. I see life as a good bottle of red wine: You fill it and when the bottle is full you close it with the cork - bottle and cork belong together, so life is nothing without death, right?
Sometimes I hear that patients are told “We cannot do anything anymore” and then I have the impression that they give up. I feel sorry for these people that they allow someone else to judge the worth or purpose of their lives. Of course, it is not the same anymore, but there is always a way to live, different, but to live. Palliative Care is able to do a lot today to reduce pain, nausea etc. and I also like to take care of the spiritual needs of a person. One of my most impressive patients was a 34 year old woman with brain cancer. We got to know each other in hospital and when she went to a hospice I visited her there. Usually, I do not do this, but in this case I had a good feeling and at the end the gut feeling was right. She told me that at this age she felt too young to die and from that moment on she took everything she was able to get.
She had wonderful colleagues who came every day after work. They went with her to the cinema and we had so much fun. There was always laughter in our room that the nurses always wanted to stay with us. They brought food, her favorite Polish dish: Piroggi, and we sat together having dinner, strangers who had become friends. She told me that she did not know that her colleagues liked her and she was astonished to feel this love at the end of her life. I sometime had the feeling I was in a movie watching these people having fun in the room and crying outside.
Eventually, the day came and she could not leave her bed anymore, she had nightmares and saw it as a personal failure that she was not able to fight with death anymore. Her death was not easy to take. I was always afraid that someone would touch me in a way that I couldn’t bear. But I have learned that I am stronger than I thought.
I cried a lot, I saw her everywhere, but then I told myself it is ok. This young woman left a big footprint in this world and I see a story behind this young death: the fact that she taught us to fight until the very end and we shouldn’t stop because someone tells you that you are not able to heal.
As regards to dignity, I met a woman who had been suffering from cancer for four years. She was fed up with her illness and the ups and downs. She wanted to die as soon as possible. We had a small conversation. She was very clear what she wanted, her children did not know about her illness and from one moment to the other, she was quiet and we sat together for some time in silence. She did not believe in God or something else, but when I left the room I asked her if I should ask God for his grace to release her. With tears in her eyes she nodded and I said, ok I will ask him this evening, which I did. I was very touched by her and that we only sat together and it was ok that no one had actually spoken. I realized that for her everything was clear said and words were not needed anymore.
During the last three years I have met so many amazing patients for whom I share the greatest appreciation. Some people say “I could not do this, how can you stand it? How are you still doing this?” I guess one reason is that I have learned to accept death as part of life and to see people relieved of their suffering also helps a lot. When people die it is often a relief. I know that it is hard to leave this life behind but in the end everyone does it and you see that the ones who fight so much can actually turn away from relatives, loved ones and life, going their last way.
Sometimes, I am proud of these people – no one really understands it – but I see how difficult it is and when they are able to do it, they do not have to suffer anymore and they have grown through their illness. This gives me trust that I can manage it, too. You can fight against it, but one day, this is for sure, the time has come and you see that you will lose this fight. It is the usual way we all have to go, when the little bird spreads its wings and flies.
Of course it is not always that easy. I once came into the room of a young woman. Her mother was with her. I looked at her and had the feeling death was not far away. I offered my service and the mother accepted the cake. I went to the kitchen, came back and the mood had changed totally. She shouted at me that she does not like my damn cake, it is awful and I saw in her eyes her pain. I had the feeling that the daughter could hardly breathe because the mother did not let her. I was too inexperienced and noticed that I was not able to find the right words and talked nonsense. So, after a while, I left the room. I was shocked. Later on I met the mother on the floor, we looked each other deep in the eyes and I tried to tell her that everything was going to be ok and I could feel her pain. The daughter died two days later. There was a lesson in noticing my own limitations. Until today, I could not cope with these, but now I am at peace with what I can offer.
During the first year of training, I watched myself very carefully. I noticed everything, my reactions, my own fear and today I am grateful. Today, I know when it is too much and I need to stop. But to be honest, this does not happen very often. Patients often say “You are giving us your time, go home, you have a private life” and when I tell them that they are my teachers, that I learn so much from them and their experiences they always look at me in wonder and disbelief. For me when I see a smile of a patient or when someone touches my hair because he is not able to speak anymore gives me the strength to continue working. This is what everyone of us can give to other people around us who are in need. Active listening, compassion and showing that we are Genuinely Interested in them is all we really need to do.
Being a volunteer in the field of Palliative Care has helped me to see what is really important. I take care of my own life. You never know when your time has come, so live the moment. I do not procrastinate on the things which are important to me and I know that I have to love my life in order to balance my work as a volunteer with my private life. I would not do this without all the wonderful people I have met. Because of their stories I am able to help others who find life these days very challenging. I am grateful for this experience.
The grim reaper does not frighten me anymore, I see his sickle and know that if you open yourself to this topic you can learn from life and learn from death and most importantly, appreciate the gift of life in the place.
If you haven’t already, check out Part I of this series: My Guide for Caregivers When Your Loved One is in the Hospital to get caught up on the first five tips!
6. Seek Out Supportive Services
Many hospitals have Integrative Medicine Consult Services, providing services such as Reiki, Music Therapy, Art Therapy, Acupressure, Therapy Dog visits and basic relaxation/stress management support. I have just started to connect with the Integrative Medicine Consult team as part of my health system and have made an effort to advise my patients/families of the available services and ask if they would like such services during the course of their stay.
Spiritual counsel is also readily available. Nearly all hospitals have trained chaplains, who are more than happy to work with you and your loved one during their hospital stay. People can often be afraid to ask or unsure if the available service will match their personal beliefs, but chaplains, no matter their personal affiliation or beliefs, are specifically trained to be vessels for universal spiritual healing, being present with you and your loved ones no matter the differences that exist between your family’s beliefs and those of the chaplain.
And lastly palliative care services can be an absolutely life saver. Life saver you say? Yes, palliative care is not simply symptom management at the end of life. It is alleviating the burden of symptoms, providing spiritual and emotional support and directing care towards the most patient oriented of problems at any stage of life. In Episode 006 of my podcast: A Medicine Mind: Wisdom and Well Being, I spoke with Jonathan Bartels, one of my most impactful mentors and one of the leading experts in palliative care, and I encourage you to check out this conversation to hear how Jonathan seeks relieve suffering in those most in need, and when the time calls for it, to support patients and families through the transitional process of death and dying.
7. Academic Medical Centers Can Be Your Friend!
I know my joke in Part I of this series about facing the army of white coats is somewhat of an exaggeration, but I recognize that being confronted with so many people at one time can be quite overwhelming, Having studied at the University of Virginia School of Medicine, I saw many patients and families expressing uneasiness (or frank refusal) with regards to medical students and residents taking part in their care. While at first glance you may feel your loved one will be better off with less (or more experienced) clinicians involved, I can assure you that there are many benefits to having a true team of caregivers at very different stages of training.
While this is my personal bias and driven from my experience as a student caregiver, I encourage you to seek out the medical students and speak with your team of nurses. Residents, Fellows and the Attending Physicians are often burdened with lots of work (and not that medical students and nurses aren’t), but medical students and nurses can be your gateway to more personal discussions, story-telling and really digging into what is troubling you and your loved one. And through these lengthier and perhaps more vulnerable discussions, the student and nurse can become an additional advocate, speaking to the broader team about new ideas, needs and history garnered from you as the caregiver that otherwise may never have reached the surface. Medical students are eager to learn and nurses understand the holistic needs of the patient often better than anyone and while neither may be completely “running the show,” they can be tremendous advocates for you and your loved one.
8. The Use of Outside Medications/Supplements
Now I will preface the following statements by saying this topic is very institution dependent and potentially controversial, BUT, in general, if you as a caregiver bring in a loved one’s supplements and certain home medications in clear labeled containers, hospital institutions and staff will allow and want you to take such medications. Is your loved one currently taking some curcumin, methylfolate and a combination of adaptogens? Bring them with you in the containers and express your desire for your loved one to be supported by these herbs and supplements. If the primary provider is uncomfortable with the products that you wish to provide your loved one, than ask to engage in a mutual discussion seeking understanding clarification and intentions behind their use, but I strongly advise you to NOT hide and keep such products secret as certain products do have known negative interactions with medications and the potential negative effects can be quite devastating.
I will commonly search Mytavin to look at possible nutrient depletion in my patients based on their current medications.
For institutions with access, (The Institute for Functional Medicine is one) one can get also get access to Natural Medicines Database in order to examine available data about natural products, possible adverse drug interactions, and nutrients that can be depleted while taking certain medications.
I cannot and am not going to give you recommendation for specific supplements, but I will provide some options to consider that are generally well accepted at most institutions and can be quite beneficial as part of a healing regimen
9. Ask Questions and Engage in Shared Decision Making
It is your right to ask about the role of certain tests, medications or procedures in the course of your loved one’s healing. Those of us desiring to be more integrative in our approach can easily tune out to invasive tests or drugs just by their label, but you must remain open and inquire with your team as to their reasoning and logic behind the overall care plan. Ask specifically about each medication- how does it work, how might it help, what are possible adverse effects and risks, what are the alternatives, how likely will my loved one benefit and what it the expected magnitude of this benefit?
Ask about lab tests, following up on results as you desire, ask for printed results or copies. Ask similar questions about the reason behind certain labs, what is the perceived benefit of this test and what exactly does the result mean? Usually it is not so cut and dry as disease or no disease. And most importantly inquire into how such testing will change or improve treatment for your loved one.
10. Protect the Microbiome
I left this for last because it is arguably the most important and perhaps the least well understood in acute hospitalized medicine. As we come to understand the vital role for maintaining a balanced and diverse microecology of bacteria, viruses and fungi on many of our body surfaces and organs, we see that antibiotics are not a silver bullet even in the most appropriate of circumstances. Recommendations from recently compiled data and systematic reviews are beginning to echo the importance and efficacy of probiotic supplementation during courses of antibiotics and in the healing period in general to prevent adverse effects and difficult to treat hospital acquired infections (1,2).
An example of such data is a recent review from the American Academy of Family Physicians summarizing the currently available and broad research on probiotic supplementation for various gastrointestinal conditions.
A sample from the conclusion:
“There is high-quality evidence that probiotics are effective for acute infectious diarrhea, antibiotic-associated diarrhea, Clostridium difficile–associated diarrhea, hepatic encephalopathy, ulcerative colitis, irritable bowel syndrome, functional gastrointestinal disorders, and necrotizing enterocolitis. “
“Probiotics are safe for infants, children, adults, and older patients, but caution is advised in immunologically vulnerable populations”
Of particular interest is the high level of evidence supporting probiotics in preventing antibiotic associated diarrhea, infectious diarrhea and in the prevention of C. Difficile, a rather terrible intestinal infection often acquired during hospital admissions involving extensive antibiotic treatment.
It is important to recognize that probiotics are not for everyone including the critically ill, septic or otherwise immunocompromised. There are numerous case reports of probiotics entering the bloodstream (likely due to intestinal permeability and dysregulation of mucosal barriers) and causing serious blood infections.
That being said, most institutions have pharmaceutical grade probiotics that can be given in conjunction with antibiotic treatment, but not all doctors and staff may be entirely aware of their availability. You can be an advocate for your loved one to ensure that a discussion regarding the use probiotics during a hospital stay occurs and that the right steps are taken to help support your loved one’s microbiotic ecosystem and overall health.
There is even emerging research now regarding the use of probiotic based cleaning solutions to minimize antibiotic resistance and decrease total hospital associated infections in inpatients (3). Who knows how we will be “cleaning” hospital surfaces in 5 years time?
There are many other ways besides probiotic supplementation to support and “protect” your loved one’s gut ecosystem. Incorporating fermented foods and prebiotics as tolerated in a palatable and easily digestible forms can be quite helpful to support the gut ecosystem. Focusing on our other key lifestyle factors including sleep and stress management will also help to regulate the intestinal mucosal barrier and maintain a diverse and supportive environment
I hope this has been a helpful guide and introduction into integrative and supportive care for those requiring hospitalization. Hospitals will never be perfect, but we can all make greater efforts to support our patients and our loved ones through the plethora of means available in order to remove obstacles to cure, and in the end, promote flourishing and joy for all.
1. Probiotics for Gastrointestinal Conditions: A Summary of the Evidence
2. Timely Use of Probiotics in Hospitalized Adults Prevents Clostridium difficile Infection: A Systematic Review With Meta-Regression Analysis.
3. Impact of a Probiotic-Based Cleaning Intervention on the Microbiota Ecosystem of the Hospital Surfaces: Focus on the Resistome Remodulation