When a patient’s cancer care team determines treatment is no longer working, it’s time to make some difficult decisions regarding long-term care, writes one breast cancer survivor. Here, she shares advice on how family members can offer their love and support.
When my father-in-law was diagnosed with a rare form of brain cancer many years ago, he was told his chances for survival were less than 1%. Although the odds were not in his favor, he chose to undergo treatment to prolong his life.
Day after day, we watched him valiantly fight. As treatment progressed, we watched him slowly decline. After enduring many rounds of radiation, he suffered painful burns and was unable to eat. We wondered how much more he could endure. When his body grew too weak to continue with treatment, the doctor mentioned hospice care, which my father-in-law readily accepted.
After making his decision, my husband and I watched the day a hospital bed was delivered and set up. Instantly, the home was turned into a medical facility. Nitrile gloves, blue plastic-backed pads, bedpans, urinals and other items were moved into place.
As more equipment arrived, we became overwhelmed as we listened to instructions on use. We felt unsure and afraid but were told not to worry, because we’d have the support of the hospice team. A nurse would come daily to check vital signs and administer medication. We’d have access to a chaplain if we needed one and would also have 24/7 access to staff for questions or concerns. It was a challenging time, but we were thankful to have extra support.
Making the decision to accept hospice care wasn’t something my father-in-law made lightly. He wanted to help the family with one final act of love.
Choosing end-of-life care is never easy, but for a person with advanced cancer, it’s a necessary and practical decision.
There are two types of care available to the person with end-stage cancer.
This form of care designed to make the person feel better but that doesn’t actively treat the disease. This type of care can be used to manage symptoms like pain, nausea, etc. It may involve medical procedures such as surgery or chemotherapy. Some tend to think of it as a last resort, but palliative care can be implemented at any time and may continue for long periods of time. Palliative care is often covered by private insurance companies, Medicare or Medicaid. (The website: http://www.nhpco.org can provide more information on a program in your area.)
This form of care typically goes into effect when a patient’s life expectancy is six months or less. In the majority of cases, a doctor’s recommendation is required for a patient to enter hospice care. Hospice care can be performed in an offsite facility or in the patient’s home. This type of care normally provides nursing services, medical equipment and supplies, skilled doctors, medications and counseling services, along with spiritual and emotional support. Hospice care is typically covered by Medicare, Medicaid or private insurance companies.
When someone with advanced-stage cancer receives the news that treatment is no longer working, they may decide to immediately discontinue treatment. When that time comes, family members may not easily understand or accept the loved one’s decision. They may feel the person is giving up or has lost hope, but that isn’t necessarily the case.
When my father-in-law asked the doctor to facilitate in-home hospice care, we didn’t question the decision because it was his to make. We did everything possible to support him. We visited often, volunteering to sit with him so my mother-in-law could have a break. We made sure we were available when the nurse came to give updates on his condition and care. We took advantage of the times he was lucid listening carefully as he shared his thoughts, hopes and dreams. It was a difficult but precious time.
When his condition deteriorated and he was unable to breathe on his own, we were thankful the hospice team stepped in to make him more comfortable. They upped the dosage of his morphine and increased his oxygen levels.
On the day he died, they helped us understand and accept what had happened, before helping us prepare his body for the funeral home.
Communicating about end-of-life decisions is very important. Studies have shown that when a person with late-stage cancer discusses options for care before it’s needed, stress levels decrease. That’s the reason many with cancer are encouraged to formulate an advanced directive or a living will. In those documents, choices can be clearly defined leaving the family free from making vital last-minute decisions.
An advanced directive helps medical staff understand a person’s wishes and may contain information such as the name of a person designated as medical durable power of attorney, someone specifically chosen to make medical decisions in the event the person with cancer is unable to do so. A living will may state whether or not a person wishes to be resuscitated or receive other life-sustaining assistance.
Many times, these forms can be printed from free online resources. In some states, they are considered a legal document as long as they are notarized. In other instances, a lawyer is needed. Always check your state laws regarding these types of documents to insure they are legal and binding.
No one knows what the future holds and there’s nothing wrong with hoping for more time. Planning ahead can be beneficial for everyone involved.
Helping a loved one cope with advanced cancer takes a great deal of patience and understanding. In the words of Eva Burrows, “In family life, love is the oil that eases friction, the cement that binds closer together and the music that brings harmony.”
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