From the point of their diagnosis, cancer patients and their families encounter a number of significant transitional points. Decisions about where to seek treatment, which type of therapy will best meet treatment goals and how to approach survivorship planning—all are pivotal junctures on the cancer journey, requiring careful consideration of all available insight and a deep examination of personal priorities. For some patients, making the decision to stop active treatment and focus on quality of life is another such milestone. If you and your family reach this crossroads, know that this transition, like so many others you have managed on your journey, presents the opportunity to make an empowered choice. By educating yourself about all the care options and planning tools available, you can make informed decisions that will allow you to embrace what is most meaningful to you at this stage.
Defining the Next Stage
If active treatment is no longer effective in managing the growth of cancer, or if side effects or risks of treatment become excessive, you may be ready to consider focusing on comfort and well-being.
Brandy Ficek, MD, Medical Director of Quality of Life and Palliative Medicine at Cancer Treatment Centers of America® (CTCA) in Goodyear, Arizona, says, “At some point in a patient’s cancer journey, standard treatment options such as chemotherapy or radiation may no longer have the same benefit. In some cases, instead of treating the cancer and providing patients with more time, which is the goal of these treatments, they can actually shorten a person’s life.” When physicians recognize that a patient has reached this juncture, Dr. Ficek says, they will recommend a transition to hospice care. “Hospice provides the next step, as it can provide aggressive symptom management and thereby maximize the quality of time a patient can share with friends and family.”
Hospice care is defined by the National Cancer Institute as “special care for people who are near the end of life and for their families.” Hospice care is provided by specially trained staff, which could potentially include a doctor, nurse, home health aide, social worker and chaplain, either in the home or in a hospital, hospice or nursing facility. The focus of hospice care is on improving quality of life by managing symptoms, and it is interdisciplinary, meaning that in addition to medical care, patients and families are provided emotional and spiritual support. It is worth noting that a patient’s doctor must confirm that the patient has six months or less to live to qualify to receive hospice services, but entering hospice care is not an irreversible decision; hospice patients do sometimes resume treatment.
Though certainly a difficult and complex decision, making the choice to transition from active treatment to hospice care can benefit and enrich the experience of patients and their loved ones. “Ending active treatment is not giving up,” says Julie Campbell, BSN, RN, OCN, a nurse and care manager who assists with hospice information and transition for patients at CTCA® in Zion, Illinois. “It’s about pursuing comfort and quality of life.”
Starting the Conversation
Just as when you begin cancer treatment by discussing your goals with your care team and your loved ones, conversations about stopping active treatment should include careful consideration of your priorities.
Dr. Ficek says that conversations about care planning at every stage of the cancer journey should be driven by the patient’s priorities. When she participates in these discussions, she says, she always begins with a conversation about the patient’s goals for care. Dr. Ficek says it is important for patients and families to know that there are treatment options that can provide symptom and side-effect relief and comfort.
Campbell says that conversations about transitioning away from active treatment should revolve around one key question: Is active treatment still serving your goals? Is it, for example, still controlling the cancer? Do the benefits of treatment still outweigh the side effects and the risks? If not, it may be time to discuss hospice care, which, Campbell says, can provide “dignity and quality of life and make comfort a priority.”
Campbell stresses that hospice is very much another proactive choice in the care of yourself or a loved one. The goals are positive: comfort and pain control.
Your Choice is the Right Choice
With an empowered approach, the transition to care can be very positive, but it is still a weighty decision. Campbell explains that though the choice is ultimately personal, she helps patients and families begin the process by focusing on the facts; she considers such factors as lab counts, or blood counts, which monitor the body’s response to treatment, along with other clinical indicators of physical health and the impact of treatment.
If, for example, a patient’s red blood cells, white blood cells or platelets are dangerously low and the immune system is severely compromised, it might not be safe to continue treatment. Hospice care may, at this point, be the safest option with the best quality of life. “We put all the facts out there,” Campbell says, “and then discuss who can offer what.”
“There are no ‘right’ answers,” explains Dr. Ficek. “The only ‘right’ one is the one you choose.” She recommends that patients consider if side effects are tolerable enough to warrant continuing treatment, how treatment is affecting quality of life and whether symptoms are keeping the patient from doing what he or she wants to do. “Know there’s support for whatever decision you make,” she stresses.
Talk About it Now
Discussing end-of-life issues (will, advanced directive, burial and memorial plans), while sometimes difficult, can
present families with a valuable opportunity to share their feelings and priorities. Discussing the end of active treatment long before you have to make a decision is part of making an empowered choice— and a choice with which all involved can be at peace.
There is no standard timing for this conversation, says Campbell, but she recommends talking about choices beyond
active treatment before it becomes a necessity. “You may want to talk about it when you start to realize that, due to side effects, conventional treatment may do more harm than good,” she explains.
Some patients and families may want to consider their options when they begin treatment, as they discuss their overall priorities for care. Dr. Ficek encourages this approach, noting that “it’s easier to make a rational decision before there’s an emotional crisis.”
Making the Transition
According to Robin Childs, chaplain at CTCA in Philadelphia, Pennsylvania, your faith, spiritual or social community can help support you through the transition from active treatment. As a member of the Pastoral Care Team at CTCA, Childs says, he plays an active role in seeing patients and families through this process. “I help family members and loved ones say what they need to say to each other,” says Childs of his role as a chaplain. “I encourage them to stay in the moment and let go of fear.”
Childs suggests that if you are a person of faith, inviting spiritual support into your life at this juncture can be very beneficial. And, he adds, even if you are unsure of your religious beliefs, this can be a time to take a step back from the situation and take in a larger perspective, inviting in new possibilities.
“Patients and families tend to get caught up in the particulars of cancer and treatment,” says Childs. It becomes easy to miss the “big picture” and not recognize when treatment is no longer serving the patient’s goals. “Back up and get perspective,” he encourages. “Consider, ‘What is life for?’” This view, he says, can help families acknowledge what really matters, such as their love for one another.
Making a Positive Transition
Childs says that a lot of good things can come with the transition to hospice care. “Quality of life can improve immensely,” he explains. And patients may feel better without active treatment, allowing them to be more present with family. “It’s a great thing to focus on loving the people in your life and connecting,” Childs says. “It’s an incredibly empowered choice.”
In no way must ending active treatment mean ending all treatment. Given the breadth of care available through hospice, it is quite the opposite: You or your loved one continues to have your health needs met, from the physical to the emotional and spiritual. According to Childs, the goal is “a peaceful transition,” and with the right resources this can be achieved.
The transition itself, however, can still be daunting. It is natural to be apprehensive about a change, especially if you are accustomed to a caring oncology team. By understanding hospice care resources, however, nurses like Campbell can help: “You’re not under our care when you go into hospice, but we can help with transition,” she says.
The transition can also bring great relief and peace to loved ones. Hospice offers a lot of support to caregivers, allowing them to rest and seek emotional and social support for themselves. “The hospice team can be a wonderful gift,” Childs explains. “It can help family be more about family, not medical care.”
Your Journey, Your Choice
With an empowered choice about care after active treatment, you ensure that your journey continues on your terms, honoring who you are and what is most precious to you. You may not have chosen a cancer diagnosis, but with wonderful resources and support provided by hospice care, you can choose to live fully throughout the journey.
National and local organizations can provide information and support for patients and families considering hospice care:
- Hospice Foundation of America
- National Association for Home Care & Hospice
- National Hospice and Palliative Care Organization
- Visiting Nurse Associations of America
- Center to Advance Palliative Care
- Caregiver Action Network