Touch can be a great blessing. If the person accepts your touch, hold their hand, let the love you feel for them flow from your body to theirs through your clasped hands. Tip: Be sure to slide your hand underneath theirs, so that if they want to stop holding your hand it will be easy for them to take their hand away from yours. If yours is on top, it may feel heavy and even oppressive to them. Bottom is best!
As a part of my series about the women in wellness, I had the pleasure of interviewing Joan Paddock Maxwell.
Joan has served for many years as a chaplain in three acute-care hospitals, where she worked with hundreds of patients with life-threatening illnesses. She was there when many of these patients drew their last breaths. For some, she was the only person by their bedside when they died.
As a speaker and author, Joan offers concepts and tools that help families and friends better understand the dying process and be more supportive to their loved ones, providing hope and peace as they approach their life’s end.
Joan approaches a challenging topic with compassion infused with humor, and provides helpful, practical information for anyone facing or anticipating the life-threatening illness of a loved one or themselves.
Thank you so much for doing this with us! Our readers would love to “get to know you” better. Can you share your “backstory” with us?
The funny thing about this kind of work, is that most people don’t start out knowing they will work with dying people. It was a call, or you could even call it a whisper. One that I tried to ignore at first, but it pulled and tugged, and led me to exactly where I believe I am supposed to be, helping people in their last days.
I was 12 when I first learned about how many people fear death. Cheryl, a kid I’d just met at summer camp, whispered, “Do you know just about every kid here has a broken family?” “Yeah, I know,” I said. “My mom died when I was 3.” Cheryl’s face twisted. “Both my parents are alive,” she said as she backed away. She had questions, but she was afraid to ask. At that moment, I realized she was now scared of me, and we would never be friends. That happened again, many times.
Losing my mother when I was a young child put the profound impact of death front and center in my life. The questions came — what is it like to die? What do dying people want? What can people do to support a dying person? I’ve spent a lifetime searching for answers, and I’m still searching. Learning how to support dying people and those they love has been one of the most meaningful quests of my life, and I feel compelled to share that learning with others.
For six years, I was the interfaith chaplain on the palliative care team at George Washington University Hospital in Washington, DC, meaning I worked with patients with life-threatening illnesses, some of whom were dying.
When people ask me how I became a chaplain. I usually answer in terms of a farmer catching a chicken. Imagine that you are in a barnyard and want to get a wandering chicken from one side of the yard to the other. If you run at the chicken to try to catch it, the chicken will scamper away as fast as it can. It is much more effective to take a few kernels of corn and slowly drop them one by one, leading the chicken where you want to go. And so it is with God leading me.
Can you share the most interesting story that happened to you since you started your career? What were the main lessons or takeaways from that story?
When I first started as a chaplain, I found it extremely hard, even terrifying, to ask if people thought they were dying.
One day a patient asked me, “Chaplain, when you’re dying do you feel different inside?”
I figured I better check what she meant by inside. “Do you mean in your body?” I asked.
“No, in yourself.” she replied. “They told me I am dying, but I feel just the same inside.”
I figured out that this woman felt the same inside so she thought perhaps that meant she was not dying, she hoped she was not dying. That meant I had to ask her about her feelings about the possibility of her dying. I had to use what my chaplain colleagues and I used to call “the ‘D’ word.” D stood for Death and Dying.
The old adage “Sink or Swim” refers to the belief that you can teach someone to swim just by throwing them in deep water (not an approach that I endorse!). Similarly, chaplains are taught to be with a dying person by being with a dying person. You are sent in to see them, and if you are terrified, if you don’t know what to say, with luck you won’t say much. And that is just what is necessary! You are not there to fix it, because you can’t. You are there to be present to them, to listen to whatever they want to tell you, to be calm and supportive of whatever is going on within them.
Over time I became relatively comfortable broaching the D word for one simple reason: if patients want to talk about it, bringing up death is a gift to them. They want to discuss what is on their mind with someone who is compassionate yet totally uninvolved in their lives. The compassion means they can tell me what they are feeling and be gently received; the lack of involvement means they don’t have to worry about upsetting me when they’re talking about their own pain and fear.
Can you share a story about the biggest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
The biggest mistake I made when I was first starting was thinking that I had to have answers. I learned that most people wanted to hear questions from a chaplain, not answers. Questions about how they were feeling, thinking, about what they were afraid of, about what gave them joy. And they only needed one or two questions to start talking. Whatever came up was what was most meaningful to them.
Patients at the end of their lives also spend a lot of time being “done to”. They really appreciate the opportunity to be in charge and direct the conversation. An attentive chaplain will learn over time to discern little signals in what the patient says that seem to point to their greatest conversational need.
Respect and wholehearted acceptance on the part of the chaplain facilitates this process.
None of us is able to achieve success without some help along the way. Is there a particular person to whom you are grateful who helped get you to where you are? Can you share a story about that?
I am most grateful to my first supervisor, Chaplain James D. Nenninger, who was indisputably the most gifted chaplain I have ever had the privilege to observe. When he went into a room, the molecules in the air stopped wiggling, he brought peace and presence with him.
He permitted me to observe him in extremely stressful situations; he would be the serving chaplain and I would be the wallpaper. Over time, slowly, he let us swap positions.
He was brave enough to make his own life a teaching tool. While I was studying with him his father died, and he would bring back to me and the other trainees deeply moving personal stories of how his family went through the grief and the loss of their beloved patriarch. He managed to mourn and teach at the same time. I was so lucky to have him as a mentor.
Ok perfect. Now let’s jump to our main focus. When it comes to health and wellness, how is the work you are doing helping to make a positive impact in the world?
A lot of people ask what a chaplain is. The purpose of a chaplain is to give patients spiritual support. This can be anything from formal prayers from their particular religious tradition, if they have one, to open-ended questions that help patients explore what is the central meaning of their individual lives. There are times when a silly joke is the best medicine.
People always think a hospital chaplain is just about religion. Some people believe that only their own branch of their religion is legitimate, but that leaves so many people outside the lines. I was an interfaith chaplain, serving people of every religious tradition — if they would permit me to do so — and people who had no religious beliefs, all the while being personally grounded in the Christian tradition.
I believe there are many different avenues through which people can be in touch with the spiritual. Religion is just one of these five ways. They are:
- Religion: your faith in a higher power
- The sense of something inside, your soul, your self, your spirit
- Deep interpersonal relationships, with your parents, children, partner or loved ones
- Nature, like watching a sunset, being in the woods, or a gorgeous landscape
- And beauty created by human hands, like paintings, novels, poetry, music, philosophy, science
I always see in each person I endeavor to serve a candle at the center of their being, and my prayer is to help that candle burn a little brighter, even while conventional wisdom tells us it is going out.
Can you share your top five “lifestyle tweaks” that you believe will help support people’s journey towards better wellbeing? Please give an example or story for each.
We all know we will die, but few of us are willing to face that reality. It’s as if we’re trying to keep death and dying secret. Nobody benefits from this approach.
Our denial of death’s reality and inevitability stems from love — we don’t even want to imagine that our loved one will die. We suffer from “magical thinking” — we think by not mentioning the word “death” we somehow keep it from entering the sickroom. So everyone dances around the topic, doctors, family, and friends.
If the sick person can’t talk about what they see coming towards them, they are tragically lonely. They can’t do the important end-of-life work that can be done if death comes slowly rather than suddenly. If this is the case for your loved one, and you want to change things, consider enlisting the help of someone trained in opening and facilitating these difficult conversations. A palliative care chaplain might be the best place to start.
My five tips are actionable ways to support someone who is dying. One day we all will need to do this, either for someone else or for ourselves. If you are supporting someone coming to the end of life, here are 5 key features that are helpful to keep in mind.
- Realize that you cannot fix it. Many of us are fix-ers. When we hear someone is dying, we fixers want to go to that dying person and make it better somehow. When death is happening, it is happening, and you can’t stop it. The only thing you can do (assuming they already have the medical and nursing care they need) is to be a supportive, loving presence. Let yourself be directed not by your ego but rather by what the dying person seems to want or need. I am not talking about bringing a pretty vase of flowers, but by listening to something they want to talk about, or even sitting in a deep silence that they simply want to share.
- The time for doing has passed. The time for being is what is at hand. Sit, be still, be calm, be present. Let them lead.
- Be aware of the Presence. One thing that will be a surprise to some people is that there is a third, invisible Presence in the room. Religious people will apply a religious name to that Presence. People without a religious conviction will find this difficult to believe. But if you are open to it, you’ll find it is there, whatever your personal belief system. And it is there — far more than you are — to support the dying person. If you pay attention to that invisible Presence, and endeavor to attune your inner being to its guidance, you will be the best servant you can possibly be.
- Silence is good. You don’t have to talk. If they are silent, eyes closed or open, respect their silence. It is OK to bring a book and simply sit and read.
- Touch can be a great blessing. If the person accepts your touch, hold their hand, let the love you feel for them flow from your body to theirs through your clasped hands. Tip: Be sure to slide your hand underneath theirs, so that if they want to stop holding your hand it will be easy for them to take their hand away from yours. If yours is on top, it may feel heavy and even oppressive to them. Bottom is best!
If you could start a movement that would bring the most amount of wellness to the most amount of people, what would that be?
Many of us are unfamiliar with the psychological and spiritual aspects of the dying process, so dying people and their families and friends often do not receive the emotional and spiritual support they need. It’s time for this to change.
The price of being born is the inevitability of dying, but we waste a lot of energy denying that reality.
What do dying people want from us? What is helpful, and what gets in their way? What are some of the little-known things that occur as the final curtain call draws near?
This work inspired a book about what I witnessed (Soul Support: Spiritual Encounters at Life’s End) which is a collection of real stories of my patients’ final days and what they taught me about dying. As I have traveled the country sharing my experience in lectures and workshops, again and again people tell me about the dying of loved ones, saying, “I have had nobody to share this with.” They tell me of things that happened which worried or frightened them. Most of these things were common experiences, but to those unfamiliar with what happens during the dying process, they can be frightening and overwhelming.
Know that you are not alone, your story and experience matter.
What are your “5 Things I Wish Someone Told Me Before I Started” and why?
- It’s not about you. It is their death, you are there to listen and be still. (If you are busy and noisy you may hurt the dying person rather than help them.)
- Being with a dying person sometimes enables you to have the most honest conversations you have ever had. (These conversations are often fascinating and deeply enlightening — a huge gift to you, the visitor.)
- Do not be afraid to talk about death. Many fear if they talk about death they may speed the dying person’s actual death. For example, once a young medical resident physician advised me not to mention death to patients. In reality everyone who is in the hospital and sick thinks about death, including the possibility of their own death. Let dying people express their fears and hopes.
- Dying sometimes tears open bitter family wounds. Be prepared to face these with grace and understanding. Occasionally you can facilitate reconciliation, and it is wonderful when that can happen. But all you can do is facilitate, you cannot force or cause it to happen.
- At the end of life it is all about love: Love given, love received, love recollected.
Sustainability, veganism, mental health and environmental changes are big topics at the moment. Which one of these causes is dearest to you, and why?
True mental health reaches far beyond the absence of mental illness. One of the best ways to develop a resilient and generative mind and spirit is to practice a form of meditation, and to do this daily. There are many fine ways to meditate in silence, including mindfulness, yoga, centering prayer, and others.
We think the noise between our ears is who we are, but that is not true. And only time spent in intentional silence repeated day after day will introduce us to our true selves. To know our true selves, and to share that true self with others in love, friendship, and support is, in my opinion, one of the finest things we can do in life.
What is the best way our readers can follow you on social media?
You can find me on LinkedIn, Facebook and on my website joanpmaxwell.com. You can also read a collection of real stories of my patients’ final days and what they taught me about dying in Soul Support: Spiritual Encounters at Life’s End.
Thank you for these fantastic insights!