By Lillie Shockney, RN., BS., MAS, HON-ONN-CG
Lillie Shockney is the former Director of the Johns Hopkins Breast Center, a two-time breast cancer survivor, and is the facilitator of NBCF Metastatic Breast Cancer Retreats, which serve to provide metastatic patients with renewed hope, increased knowledge, and the reminder that they are not alone.
Metastatic breast cancer, also known as Stage 4 breast cancer, occurs when breast cancer cells have spread to other parts of the body, such as the bones, liver, lungs, or brain. Though metastatic breast cancer is not curable, treatment can help mitigate, or lessen, symptoms and prolong the patient’s life. Having metastatic breast cancer means that cancer will be a part of your life for the rest of your life. To support those living with metastatic breast cancer, who often feel isolated from other breast cancer patients and survivors, NBCF hosts weekend retreats to recognize and address their unique needs.
One of the topics covered at these retreats is hospice care. Hospice is designed to provide supportive care to individuals during the final phase of a terminal illness, such as metastatic breast cancer. Hospice care focuses on patient comfort and quality of life rather than treating the disease, with the ultimate goal being for the patient to be pain-free and spend her remaining time as she chooses. It also includes preparation for the end of life for the patient and their loved ones.
One of the great ironies of hospice care is that patients often begin to feel better once they begin hospice. This is because they have stopped treatments such as chemotherapy, and the toxic drugs—and their side effects—are leaving their system. Even though the cancer will continue to grow, patients may enjoy a greater quality of life during hospice care by spending time with family and friends, doing the things they love most, and getting closure as they approach the end of life.
It is incredibly important to understand what hospice care actually is. When discussing hospice care, it is appropriate to be optimistic while remaining realistic and keeping in mind what lies ahead.
Hospice is getting support, not giving up
When a patient is first diagnosed with a terminal illness like metastatic breast cancer (MBC), they may initially hope for a miracle. While maintaining a hopeful outlook is important, it is equally important to remember that MBC is a chronic illness that will be treated for the purpose of mitigating symptoms and prolonging life, rather than a cure. The goal of treatment is to have good longevity and quality of life. Eventually, an MBC patient will exhaust or go through all available therapies. When this happens, it is now the time to discuss the reality of shorter longevity with the goal of preserving quality of life.
Some people assume that enrolling in hospice means the patient has given up or that they failed in some way—failed themselves, disappointed their doctors, or disappointed their family. But opting for hospice care is NOT giving up. It is about patients retaking control of their lives and spending their remaining time as they want.
Family members may find their loved one’s decision to enter hospice hard to accept and be tempted to encourage them to “just keep fighting.” But it is important for loved ones to remember that the patient is in charge, and this decision lies with her alone. While hard to hear and accept, her family needs to love her enough to respect her wishes, even if that includes letting her go. Family members should never force a loved one to take a treatment she doesn’t want.
A common misconception of hospice care is that the patient will feel abandoned by their oncology team, and they will be given narcotics that make them sleep around the clock. But this is not the case. The goal of hospice is to keep the patient as physically comfortable as possible, not to simply incapacitate them through the administration of drugs. Hospice care workers also provide emotional and spiritual support for patients and are with them throughout their time together; patients will not be abandoned or alone.
The ins and outs of hospice care
Most hospice care is actually provided at home, although some patients may not have at-home support or may prefer to spend their final days in a hospice facility. These thoughtful discussions should take place between the patient and their primary caregiver, usually a family member or loved one, to determine what is best for each situation. Some patients will begin by receiving hospice care at home and later transfer to a hospice facility.
Hospice care is designed to last up to six months. Unfortunately, in the United States, most patients receive an average of only five days in hospice care. This is typically due to the patient’s doctor insisting they continue to receive treatment, or sometimes fear and uncertainty surrounding the purpose of hospice care prevent a patient from choosing to enter hospice earlier. As an expert in the field, my opinion is that 2 to 3 months in hospice care is an ideal length of time.
If a patient in hospice care exceeds the 6-month timeframe, they will be re-evaluated to determine the right time to resume this type of supportive care. In some cases, of course, it is immediate.
Benefits of hospice care for patients and caregivers
Hospice care is not just for the patient but also for family members. As part of hospice care, caregivers will receive education on how to manage specific aspects of the patient’s home care, such as:
- How to help a patient up from the bed and into a chair without anyone getting injured
- Nursing care and support with bathing, feeding, and more
- How to administer pain or other medications to improve comfort
- What the caregiver will observe as their loved one gets sicker, and what these signs and symptoms mean
- Spiritual care for the patient and family members
- Advice on how to get closure with a loved one, including if the caregiver has had a rocky relationship with the patient
- Grief counseling is also offered, and many hospice programs have therapy dogs for the patient and their family members
All hospice programs offer palliative care, which is specialized medical care that focuses on managing symptoms that are disruptive to a patient’s quality of life. This may be one of the most important services provided. These talented palliative care specialists, most of whom are medical oncologists themselves, focus on methods to relieve cancer patients of their side effects.
Making the most of time
Many patients, particularly those who have been sick from treatments, understand and accept the need for hospice.
There may be circumstances where a patient would like to live long enough to experience a specific event or milestone—like the birth of a grandchild, for example. In this specific case, if the baby is due to be born soon, that may be a reasonable goal. However, an unreasonable goal would be for the patient to anticipate living long enough to see their grandchild grow up and start kindergarten. In this case, there needs to be a conversation about what kind of timeframe is practical and how to fulfill their hopes in alternative ways, such as writing letters for the grandchild as he or she reaches special milestones.
It is extremely important to remember that quality of life may outweigh longevity. I often ask oncologists if their patients are simply existing, or if they are experiencing a reasonably comfortable and fulfilling quality of life. My belief is that the goal is not how many days a person lived, but how many days they lived well, free from pain and discomfort.
Putting patient-centered care at the forefront
Simply put, patients deserve patient-centered care: Treat the whole patient, not just the cancer. The patient is far more than her diagnosis or prognosis. We need to ask the patient many questions about what is important to her and keep asking these questions over time.
The questions I ask my patients include:
- How much do you know about your metastatic breast cancer? We need to ensure everyone has the same understanding of the disease, where it is located, what treatments she may be a candidate to receive, and that the goal of treatment is control, not cure.
- How much do you want to know about your metastatic breast cancer? Some patients want to know everything, and others are too overwhelmed and want information in phases as they see their treatment team.
- What are you hoping for?
- What are you most worried about?
- What is important to you?
- Tell me three things that bring you joy.
I ask these questions each time I see a patient, and the answers usually change over time as the disease eventually progresses.
Hospice care doesn’t have to be entered into with fear or uncertainty. Ask questions. Listen to the answers. Be open to hospice care at home or in a facility. And honor the wishes of your loved one.
For more information about NBCF Metastatic Breast Cancer Retreats, click here.
National Breast Cancer Foundation is here for you and your loved ones. Whether you need support, education, or help during treatment, we have a team dedicated to getting you the help you deserve.