Because of this, many women diagnosed with ovarian cancer are left with a variety of emotions to contend with, including anger, fear, and confusion. They may also find themselves vacillating between hope and wanting to keep a positive attitude and wanting to be realistic about their prognosis. But maintaining optimism about the potential of treatment to control, if not cure, the disease and considering end-of-life decisions are not necessarily mutually exclusive. Preparing for the end of life doesn’t mean you have to give up or stop treatment, or that treatment won’t work. Rather, having the difficult — and often avoided — conversations about end-of-life questions is an opportunity to think about and take charge of your priorities for how you live your life, what treatment decisions support that, and how you want the end of your life to play out if treatment doesn’t work. To the extent possible, having the difficult conversations puts you in control. RELATED: A Consumer’s Guide to Clinical Trials
Conversation 1: Advance Directives
No matter what your state of health is now, you should organize advance care directives, which outline your wishes for medical care and services, says Linda Duska, MD, a gynecologic oncologist at UVA Health in Charlottesville, Virginia. Advance care directives can include legal documents like a power of attorney or healthcare proxy (naming the person who will make healthcare decisions on your behalf should you be unable to do so), and a living will, which puts your wishes for care in writing (your desire for interventions that delay death, or don’t delay death, and where you’d like to be at the end of life, for example). “In this society, we don’t like to talk about these things, but I think we all need to be aware of them. As a doctor, I need to know who your healthcare proxy is, and I want to have your advance directive on file at the hospital,” says Dr. Duska. You and your caregiver, family members, and other loved ones should discuss your options. You need to figure out what’s best for you, and how and where you’ll be most comfortable. You should also consider the capacity of your loved ones to take care of you and whether they can provide the end-of-life care that you will require. You can opt to be at home, a hospital, or a nursing facility, to receive life-sustaining care or constant supervision. RELATED: Ovarian Cancer Survivor Stories
Conversation 2: Palliative Care Options
Another conversation all women with ovarian cancer should have with their family and providers is about palliative care. Many confuse palliative care with hospice care. But they’re not the same. Hospice care addresses people at the end of their lives. Palliative care is not end-of-life care. It is meant neither to hasten nor extend life, but rather to make people more comfortable as they navigate treatment. “It’s a global, patient-centered approach that includes aspects of care like psychological, spiritual, and financial issues, as well as supporting the patient’s caregivers at home,” says Duska. Palliative care can also address physical issues that occur as a result of the cancer or its treatment, including pain, nausea, and fatigue. Palliative care can begin at any time, including when treatment is initiated. But many experts recommend beginning it after cancer has recurred after a first round of treatment, which occurs in about 70 percent of women with ovarian cancer, according to the Ovarian Cancer Research Alliance. Having a conversation about palliative care is helpful not only because it allows you to make decisions about your quality of life as you go through treatment, but because it will help you begin to think about your values with regard to the impact of your disease on your life, what you want from treatment, what you can and cannot tolerate, which treatments support your goals, and how you would like to be supported if you do get to end-of-life care discussions. RELATED: Your Everyday Guide to Living Well With Ovarian Cancer
Conversation 3: End-of-Life Care Choices
End-of-life care is a conversation that may happen for several reasons. It may be that doctors run out of reasonable treatment options. Or it may be that treatment is having some effect on the tumor but leaving the patient with such poor quality of life that she questions whether it is worth it.
Deciding Whether to Stop Treatment
The decision about if and when to stop care is personal. And it’s difficult. But discussing and planning for end-of-life care with your caregiver and loved ones can bring a sense of peace in this difficult time. When the conversation switches to end of life, the goals of treatment become different. “This is an example of where we would talk to a patient about her goals for care,” says Duska. “For instance, does she want to get to her son’s wedding in six months? Make it to the birth of her granddaughter? Treatment then becomes directed at how can we, as her healthcare providers, help get her to this event so that she can enjoy it?” she says.
Hospice Care
This might also be a time to discuss hospice care. Deciding on hospice means you are shifting focus toward taking care of the patient’s symptoms, as well as the family, says Duska. Hospice offers an interdisciplinary medical team of support, usually including a physician, nurse, and home-health aide, according to the Hospice Foundation of America. The hospice team also includes a chaplain or spiritual adviser and a social worker to help you, your caregiver, and your family. Medicare has a list of covered services, which include medication, medical equipment, physical and occupational therapy, speech and language services, as well as grief counseling. Hospice care can be provided at home or in a nursing facility or hospital. Patients normally keep their relationship with their oncologist during hospice care. “I assure my patients who go into hospice that I won’t abandon them,” says Duska. “I still want to call and talk to them and see how they’re doing. And in the event that they change their mind and want to revoke hospice, they can do so and reenter treatment.”
