End-of-Life Care: Moving Beyond Practical Needs of Patients to Emotional Needs of People

An Interview with Kelly Grosklags, LICSW, BCD, FAAGC

Kelly Grosklags is a licensed independent clinical social worker specializing in end-of-life care for oncology patients. Her calming voice exudes kindness and compassion, and her openness about personal and professional experiences instantly conveys that she is completely committed to her life’s work. While she has over 28 years of experience in palliative and hospice care, I believe her success is rooted in her immense capacity to compassionately care for and comfort patients and their loved ones. In hearing her describe her role and experiences, it becomes apparent that her work extends past the practical needs of patients and addresses the emotional needs of grief-stricken people.

Kelly will tell you that when confronted with deep loss, we are forced to unwillingly walk a path that takes us from what was to what is. Her life experiences uniquely qualify her to walk that path alongside the grieving.

Her career path was set into motion when she lost her mother at the young age of 11. That tragic loss led Kelly to a lifelong quest to create a healing community that minimizes suffering and honors grief. She was inspired to become a voice of compassion that could guide, comfort, and support terminally ill patients and their loved ones.

Kelly is accomplishing that mission in part through her interactive speaking engagements called “Conversations with Kelly.” She is the author of A Comforted Heart: An oncology psychotherapist’s perspective on finding meaning and hope during illness and loss. And most recently, she released the documentary “Dying Is Not Giving Up.” In this award-winning documentary, a woman shares her experience from her terminal diagnosis to her final days, revealing simple and impactful opportunities for providers to add compassion and empathy to their practice.

Through these contributions, Kelly’s work can assist oncology practitioners in developing the necessary skills to treat, connect, and comfort people in their final days. I was fortunate to speak with Kelly about these contributions and her life’s work. What follows is our thoughtful exchange.

JONS: To begin, can you tell us a little about your background and how you came to establish “Conversations with Kelly”?

Ms Grosklags: My background is in clinical social work. For 28 years I have worked in some form of oncology, palliative care, or hospice. I also have a fellowship in grief counseling. After 16 years of private practice, I decided it was time to take the lessons learned and share them with larger audiences. “Conversations with Kelly” is an online and in-person community for anyone looking to heal from difficult life experiences.

JONS: Death is part of life, yet it is a topic we rarely speak about openly. How would you advise a person with cancer to start that conversation with their loved ones?

Ms Grosklags: Before anyone jumps into that conversation, the person living with cancer should have support for themselves. They should find a trusted therapist, friend, spouse, or person from their faith community to talk about their feelings around end-of-life topics.

When a patient is ready to share their news with family and friends, I suggest 1 communication; an e-mail, Zoom call, or in-person meeting. Sharing the news once is preferable to multiple discussions, mainly because breaking the news over and over again to multiple family members is emotionally exhausting. It’s also possible that things can be heard differently in different conversations.

JONS: What advice would you give to an oncology practitioner on how to start a conversation about the end of life?

Ms Grosklags: Communication preference is an important topic for oncology care providers to address up front with patients, long before they reach the end of life. Having a plan for delivering news helps establish trust between patients and providers. Receiving regular communications builds strong relationships so the framework for receiving any news, good or bad, is already established. If this step is overlooked in the beginning of a patient/provider relationship, it will be much more difficult to have a conversation about end of life and way too overwhelming for the patient.

JONS: You’ve said that even when people hear the words “nothing more can be done” from their healthcare providers, there actually is more that can be done. Can you elaborate on that?

Ms Grosklags: When I teach future medical providers, I strongly encourage them never to use that phrase. It immediately creates fear in the patient as well as feelings of abandonment. These words can easily be interpreted to mean that their team is going away, leaving the patient to fend for themself. If hospice is appropriate at this point, well, then that is something you can offer to the patient and family.

I would like to see more language such as “We are at a point where we need to switch our treatment focus from curative to physical and psychosocial disease management,” or “…from curative to comfort and support.” This can be followed up with a clinical explanation.

Another consideration; it happens sometimes that patients may feel they have let their providers down; it’s important they know they have not failed in any way. We should be aware of the “perfect patient” syndrome.

JONS: Loss can be paralyzing and debilitating for the family of someone who lost their life to cancer. How do you advise the people left behind in dealing with grief?

Ms Grosklags: Grief is a universal reaction to loss; however, each of us will react and grieve in our own ways. I always encourage people to refrain from judging or competing with others who are grieving. That includes judging ourselves.

Each day will be different. Embrace both the difficult moments and the joyful ones. Small steps in the beginning are important. Try to get outside each day. Drink plenty of water each day; grief can be dehydrating and hard on the immune system.

I encourage people who are grieving to rely on others. It is false to believe we can get through grief on our own. Healing requires allowing other people in.

JONS: You are the author of A Comforted Heart. Can you tell us a little about the book and its impact on patients and caregivers?

Ms Grosklags: I feel so grateful for the opportunity to write this book with consultation from Barbara Fleetham, RN. It is the culmination of the lessons I’ve learned from patients and my own experiences. The book was born out of my desire to share beautiful and comforting stories that speak to the ability of finding healing that comes with forgiveness, living a life of gratitude, being courageous, honoring your feelings, and really paying attention to your life.

I’ve received such wonderful, positive feedback from readers. My hope is that the book brings comfort to many in all hours of the day, but especially during the lonely hours of the night.

A Comforted Heart Book Cover

Excerpt from A Comforted Heart: An oncology psychotherapist’s perspective on finding meaning and hope during illness and loss.

Chapter One
Finding Meaning in Life
Opportunities to Heal Despite Disappointments

So often I work with people who are in situations that may not have the outcome they had hoped for. These situations may include diseases that cannot be cured or relationships that cannot be saved despite our best efforts. There are several people I work with in my practice who obviously want a cure for their disease. I, too, wish this for all my patients. Even when cure isn’t possible, healing can still happen. I witness happy and content lives from people who work hard to live in the now and focus on the beauty in front of them. I know many living with metastatic and/or chronic diseases who are incredibly content people. I believe this is due to their ability to focus on what matters most, find beauty in the simple, appreciate love, redefine hope, and keep perspective. All can certainly help heal a troubled soul. To surrender, let go, and trust is sometimes all we can do, and it is exactly what we must do.

Today, if you are struggling with wanting an outcome that may not be possible, I encourage you to release and trust as best as you can, to ask a trusted person to listen to your worries, to find gratitude in what does exist, and still find things to be hopeful for each day. Doing this will allow for more of your energy to be dedicated to those people and moments in your life that bring you joy. It’s possible that when we focus so much on a future outcome, we miss the beauty and healing going on in the now.

© 2017. Kelly Grosklags. Reprinted with permission.

JONS: Your most recent endeavor is a documentary called “Dying Is Not Giving Up.” Can you talk about the process of making the film and its impact on the medical community?

Ms Grosklags: Being part of this documentary has been one of my greatest privileges. The impetus for the film came from my desire to create an educational film about end-of-life communication for medical students in all disciplines—medical, nursing, physician assistants.

The fact is, most medical professionals lack a formal education on having difficult conversations. Of course, no one wants to deliver devastating news to people, but patients want and need honesty.

I knew I wanted to make a film, but I was still formulating the plan on how to execute it. When I left private practice, I continued to see my patients who were close to death, including Judy. I shared with her my vision of making a film. At that time, Judy had several weeks to live, but when she heard about my plan, she immediately said that she wanted and needed to be part of it. My coproducer, Bryan Piatt, and I sprang into action to interview Judy. I’m so proud of the end result—Judy allowed us to share her final days, and she gives practical and nonthreatening guidance. Such a beautiful legacy.

The film has been well received, and my hope is that all medical institutions will have this resource available as a teaching tool.

Dying Is Not Giving Up

JONS: If you could give 1 piece of advice to someone who is preparing to die, what would it be?

Ms Grosklags: I want people to know they are not alone. I want them to know they deserve to feel safe and loved. I also want people to focus on new hopes, even in those last days. Maybe that new hope is to see a certain person, maybe it’s hoping for good days of conversing with family, maybe it’s as simple as hoping to keep food down and enjoying a meal.

I want people to know that fear is understandable and that saying those fears out loud—or however they can communicate them—can help to diminish it.

I want people to know that they are courageous to surrender to what is happening within their bodies. They are not giving up. They are honoring what is.

JONS: And what advice would you give to that person’s immediate family and friends?

Ms Grosklags: Listen to hear, not to respond. Truly listen to what is being said. Reassure them they are loved and safe. It is also important to take care of yourself, and to communicate that. I can tell you that when someone is preparing to die, it is important for them to know that their loved ones are okay and well cared for.

JONS: And what advice would you give to that person’s healthcare team?

Ms Grosklags: The transition of healthcare teams can be another loss for patients. I believe that contributing to a good life and death is our responsibility and privilege as healthcare providers. My advice is to stay with the patient through the end, even if it is a periodic phone call or e-mail. I’ve witnessed beautiful moments where healthcare providers tell the patient something very specific about them that they will always remember.

JONS: What’s next for you and “Conversations with Kelly”?

Ms Grosklags: We are actively disseminating the documentary and working to safely return to postpandemic in-person events.

In addition, we now have a “Conversations with Kelly” podcast, which offers messages of healing, hope, and inspiration. Together with my cohost, Jeffrey Cloninger, we release monthly episodes, which people can download on their favorite streaming service.

I am also working on writing a second book.

JONS: Thank you for speaking with me today. Do you have any final thoughts to share with our readers?

Ms Grosklags: I am so fortunate to have learned from the greatest teachers: my patients. When we put aside our fears about working in end-of-life care, we will find there are beautiful discoveries to be made on how to live. I have always said, I have learned best on how to live from those who are dying.


Used with permission from the Journal of Oncology Navigation & Survivorship. Copyright © 2021 Green Hill Healthcare.

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