Patient and Caregiver Perspectives on Cancer Care Communication

Michael is a cancer survivor with a zeal for life that is contagious. Less than a year ago, while recovering from knee surgery, Michael noticed a lump on the left side of his neck. After a CT scan and two biopsies, he received a diagnosis of throat cancer. Due to pandemic restrictions, he received the diagnosis in a telephone call from one of his doctors. A cancer diagnosis is a stressful event under any circumstances, but the stress and hardships of cancer treatment during COVID-19 created an additional layer of uncertainty and anxiety for Michael and his family. Thanks to his wife and adult children, Michael had a strong support system. However, COVID-19 restrictions eventually prevented his wife from attending his appointments. Michael went to his appointments alone and his wife waited in the parking lot or made multiple round trips on chemotherapy days—four hours was a long time to wait in the car. Michael’s wife once waited six to seven hours, while he sought treatment in the emergency room. On both occasions, Michael’s youngest daughter drove to the hospital and joined his wife in her car to keep her company during the time it took to resolve the medical issues. 

The pandemic amplified the uncertainties that Michael experienced during his cancer journey. Like most cancer patients, Michael was at greater risk for COVID-19 because he was immunosuppressed. Concerns about contracting COVID-19 affected every area of Michael’s life. Many of his colleagues were younger and were not really concerned about the pandemic. This led Michael to begin teleworking before he had to stop working altogether. Simple activities like visiting with family and grocery shopping were upended. Saturday and Sunday mornings began with early morning trips to the store in hopes that the store was empty. Visits with grandkids suddenly stopped and several months passed before Michael was reunited with his grandkids. The first holiday missed was Easter, and soon thereafter, Mother’s Day. Holidays in Michael’s family were always big events with Michael cooking up a big meal. This year there were no hugs, kisses, or big meals. They simply talked in the driveway, socially distanced and masked.

Despite daily challenges and disruptions to Michael’s cancer care and treatment, the pandemic could not overshadow the compassion and kindness that Michael’s healthcare team provided. Michael was touched by how gentle and thoughtful his healthcare team was when prepping him for radiation treatments. Similarly, nurses from the infusion unit always came to talk with him. Despite being busy, they showed genuine interest in his well-being. Even interns brought Michael lunch and snacks. Cancer care and treatment are uniquely challenging, but these challenges are compounded when COVID-19 restrictions require patients to attend medical appointments or emergency room visits alone. Michael’s healthcare providers made him feel heard and answered his questions. Even small things like treatment simulations helped reduce anxiety and helped Michael better understand how a treatment or procedure might proceed.

These days, Michael enjoys taking trips to the beach with his wife. You can also find him playing golf, enjoying his grandkids, or applying nearly four decades of law enforcement expertise to clemency investigations in Florida. 

A patient’s cancer journey is full of unexpected twists and turns and stops along the way. That is why each member of a healthcare team has an essential responsibility to provide medical, physical, and emotional support during cancer care and treatment. To the patient, each healthcare team member is a touchpoint, an opportunity to build trust, rapport, and commitment to achieve a shared goal. These healing relationships are an integral part of every patient’s cancer journey and Michael’s journey was no exception. The healthcare team at Tallassee Memorial Cancer Center provided Michael with exceptional care. They were always honest. In fact, Michael’s radiation oncologist was brutally honest about the pain and discomfort he would experience. His honesty meant the world to Michael. When he started the more difficult part of his treatment, Michael never thought, “No one told me it would be this way.”

Many things are uncertain during a cancer journey, but Michael never had to worry about being able to get in touch with his healthcare team. If Michael called, he could always get in touch with at least one of his oncologists or the oncologist on call. On two occasions, Michael had to go to the emergency room. Both times his oncologist called in advance and had someone there to meet him. Michael’s healthcare providers also ensured continuity of care by always sharing the results of Michael’s bloodwork with his other healthcare providers. Even Michael’s patient navigator made his outside appointments and scheduled tests. Michael was treated as an individual—never as just another patient. He never felt like a random guy sitting in a chair getting chemotherapy. Instead, he was asked questions about what mattered most, his wife, family, and what he did for a living. The care and information that Michael received was personal and was based on a mutual understanding with his healthcare team.

The emotional impact of a cancer diagnosis, care, and treatment can be overwhelming. Michael’s oncologists and nurses made a point to talk to him about how he was feeling at every appointment. There was no question that someone was reading the intake form that Michael completed at each visit. After a particularly difficult chemotherapy appointment, Michael’s patient navigator, seeing Michael crying on his way to his radiation treatment, stopped, gave him a hug, and consoled him for almost 30 minutes. A mental health counsellor also called as soon as he arrived home to make sure he was okay. They talked for an hour. It made all the difference to Michael. He knew he wasn’t just another patient in the hospital. Michael’s healthcare providers were able to respond to his needs with empathy and support because they understood him as a person. These healing relationships are even more important as many patients, like Michael, cope with the stress of isolation and fear while receiving treatment during COVID-19.

Ben is a cancer survivor and advocate and he is committed to changing the face of colorectal cancer. Five years ago, Ben was living his dream as a pilot in the Navy when he began to have abdominal pain and discomfort that gradually worsened. Despite having classic symptoms, Ben did not fit the profile of someone with colorectal cancer. He was only 26. After a long and frustrating search for answers and relief, Ben’s diagnostic odyssey ended abruptly when he awoke from exploratory surgery with a colostomy. His surgeon had found cancer.   

Ben’s treatment began in Florida, where he was stationed, and led him across country to California where his family lived. Although Florida offered state-of-the-art treatment and facilities and a network of friends, Ben’s move to California gave him a much-needed community of care. His new healthcare team took the time to know him. Ben was more than a patient. His healthcare providers established a personal connection with him—his concerns were their concerns. Based on their mutual understanding and respect for each other, they moved forward with a treatment plan that sought to preserve his career (medical standards for aviation are high) and aspects of his life that were important to him as a young man, such as his fertility. 

Genuine and ongoing communication is an investment that builds trust, rapport, and commitment between patients and their healthcare team. Healing relationships ensure that the person, not just the patient, receives knowledge, information, and treatment that is based on a shared understanding of what matters most to them.

Life changes in unexpected ways with a cancer diagnosis and uncertainty is a constant companion along the cancer journey. Ben’s early onset of colorectal cancer left him with a host of uncertainties. Many of these uncertainties were unique to his cancer journey. Most colorectal cancers occur in people older than 50 and men are typically in their early 60s when diagnosed. Ben was just 26 at the time of his diagnosis.

When met with the reality of his cancer diagnosis, Ben had to abruptly shift focus from a burgeoning career to navigate a health crisis that would require a community of care. He would need the support of his family—family that lived nearly 3,000 miles away. With guidance from his healthcare team, Ben was able to successfully manage where his treatment would occur and who would take care of him. Despite limited prognostic information for his age group, Ben’s oncologists were proactive about addressing uncertainties and preparing him for different treatment scenarios and potential outcomes for his health and career. His oncologist also communicated early and often about uncertainties related to questionable lab results, follow-up, and reoccurrences by offering ongoing support and information. As a result, Ben knew what to expect and was better prepared to deal with uncertainties.

Communication that acknowledges uncertainties and offers information, support, and strategies can help prepare patients to manage uncertainties, reduce anxiety, and improve health outcomes for people diagnosed with cancer.

Kellie is a caregiver turned advocate who is giving back to the patient community. A cancer diagnosis is a traumatic life event that can easily overwhelm a patient and their family. Kellie’s mother was barely conscious in the recovery room following a colonoscopy, when she was told she might have cancer. The diagnosis was intermingled with voices of other patients—strangers—just beyond the sheet that separated them. Once alert and dressed, her mother was promptly notified of her appointment with an oncologist. As her caregiver, Kellie was left to wonder why her mother was given a diagnosis while still in recovery. There was no explanation of what to expect, and no one took the time to share the news with Kellie. Both moments were missed opportunities to communicate in a way that established trust and fostered healing during a very difficult time for Kellie and her mother. 

Kellie’s passion for awareness and compassionate care is fueled by the many challenges that she and her mother experienced while seeking care in their small town and in a large hospital more than 300 miles from their home. Neither Kellie nor her mother were aware of important social and emotional supports available to them during their cancer journey. These hard-learned lessons are guideposts to educate and empower patients to help them receive care that is attentive, responsive, and tailored to their needs. Kellie hopes that knowledge gained from her experience will help others navigate their journeys with dignity and the respect they deserve.

Effective communication is a key component of cancer care. Informative, responsive, and compassionate communication equips patients and their loved ones with knowledge and resources to better manage difficult news and handle the impact of their diagnoses.

A cancer journey can be an intensely difficult experience for both the patient and family. As a caregiver, Kellie had a front-row seat to her mother’s frustrations as treatment options diminished. Despite many appointments and office visits, the emotional and mental aspects of their journey were not addressed. Counseling referrals were not given, neither were social services nor support groups recommended. The focus remained on treating the cancer, missing an all too important aspect of cancer care—mental and emotional health/support. Kellie and her mother were forced to manage the emotional impact of her mother’s illness without support. Worn, frustrated, and nearing the end, Kellie and her mother fought hard to exit treatment and enter a supportive environment where her mother’s needs could be met.

Hospice opened a new world to Kellie. Not only was there an entire team dedicated to her mother’s care, but there were people who cared about Kellie as well. It was the first time someone had considered her feelings as a caregiver and acknowledged that her mother wasn’t the only patient—Kellie wasn’t just a caregiver. She was the other patient in her mother’s journey. Kellie was encouraged to eat, take walks, and take time to care for herself. After all, Kellie was a mother and worked full-time. Many of the resources and support systems that Kellie came to learn about were not discovered in time to help her mother. That is why Kellie is committed to helping others understand their options as patients and caregivers. She hopes to empower people with information to make decisions about their care, enable self-management, and increase cancer awareness.

Communication that acknowledges patient emotions and offers validation, support, and empathy helps patients better manage the emotional aspects of their cancer journeys and improves health-related quality of life. The following tips can help physicians understand and respond to patients’ emotional needs:

• Be compassionate
• Ask about the patient’s social support
• Remember, even though a physician has given many people a cancer diagnosis, this is the first time for the patient
• Don’t forget about the caregiver—ask how the caregiver is coping (e.g., stress, fatigue, isolation), then assess and provide support.

Wenora knows what’s right for her and makes sure she is informed. With her first cancer diagnosis, she knew that she wanted the level of care that her local oncologist could provide. After three months of chemotherapy and discussions with her oncologist, she also knew her body had had enough. She decided to stop chemotherapy. At every opportunity, her oncologist provided information to help Wenora think through her decision. She even encouraged Wenora to speak with another physician, but equally understood and respected Wenora’s decision.

Wenora’s oncologist also suspected that she had Lynch syndrome, because of the type of cancer she had. Lynch syndrome patients are genetically predisposed to different types of cancers. Her oncologist recommended genetic testing at every opportunity—she would even code the test to reduce the burden of the expense. Two years later, Wenora took the test. As suspected, Wenora was a Lynch syndrome patient with an 80 percent chance of getting endometrial cancer in five years. Thanks to her oncologist’s frank discussions about preventive care, Wenora decided to have a hysterectomy and later learned that endometrial cancer was already present. Because of her oncologist’s persistence in sharing vital information about Lynch syndrome, Wenora was able to avoid another round of chemotherapy and treatment.

Patient-provider dialogue about decisions is important in all phases of cancer care. This dialogue helps patients and physicians make decisions based on the best scientific evidence and understanding of what matters most to patients.