Coping with Late-Stage Blood Cancers
In some cases, after all appropriate and necessary treatments have been tried, the cancer may continue to progress or worsen, and doctors may determine it’s best to stop treatment. Sometimes, it may be the patient who decides that it’s time for treatment to stop, when the side effects of treatments are no longer worth the impact on the quality of their life. While the time at the end of a person’s life is unique as the individual, there are some common components and medical care that can ease a person’s transition.1
Hospice care is compassionate care for people facing life-limiting illness or injury. It is sometimes called end-of-life care, and hospice usually involves a team approach to help the patient with medical care, pain management, emotional support and spiritual support. Hospice care can also provide counseling support to the patient’s family members. Hospice provides supportive care that aims to improve the quality of life rather than focusing on treating the illness, and the underlying belief that guides hospice care is that each person has the right to die pain-free and with dignity.1,2
Hospice care may include medical professionals, medical equipment and supplies, short-term relief services for caregivers, medications to manage blood cancer-related symptoms, spiritual support, and counseling, and social work services. Hospice care focuses on controlling pain and symptoms of blood cancer to allow patients to be as comfortable as possible near the end of life. The goal of hospice care isn’t to speed up or postpone death, and if the patient’s cancer goes into remission, hospice care can be discontinued or stopped. Making the choice to have hospice care doesn’t mean the patient is “giving up.” Rather, it means the priorities of treatment have changed.1,2
While end-of-life planning can be difficult for the patient with blood cancer and for their loved ones, by undertaking the steps to plan for what one wants, the individual gets to shape the ending of their story. End-of-life planning usually includes making decisions on their goals of care, where they want to spend their final days (for example, at home versus in the hospital), which treatments for end-of-life care they want to receive, and what type of palliative care and/or hospice care they want to receive.3-5
End-of-life planning encompasses more than just the medical care. In addition to making decisions about health care, end-of-life planning can include legal and financial decision-making, funeral and memorial planning, and determining what legacy someone wants to leave for others, or how they want to be remembered. By making these decisions ahead of time, the person can provide helpful information for their families and friends, as well as ensure their individual values are reflected in these decisions.3-5
Coping for caregivers
Watching someone you love get sicker and near the end of their life is incredibly hard, but being present for the person is one of the most important things you can do. Talk to your loved one about how you can best support them. Some ideas for providing comfort include:
- Share your company by talking, watching movies or shows, listening to music, or reading to them.
- Listen to your loved one’s stories of reminiscing and allow them to express their fears or concerns about dying.
- Respect their needs for privacy or quiet time.
- Reassure them you will follow their advance directives, including living wills (legal documentation that specifies the wishes of the patient on the use of breathing machines or other machines that can prolong life).1
It’s critical that caregivers also take care of themselves, including getting proper rest, nutrition, and breaks from caregiving. Taking care of someone who is at the end of their life can be incredibly stressful and can cause emotional and physical fatigue, depression, and anxiety. Ask for help from family and friends, and seek professional help if you feel overwhelmed by depression or anxiety.1