Caring for Someone at the End of Life

Sometimes a person's health care team determines that the cancer can no longer be controlled. Medical testing and cancer treatment often stop at that point. The person's care does not stop. It continues, with the emphasis shifted to comfort, dignity and quality of life. That is true for them and for the people who love them.

This is tender ground. This article covers what end-of-life care involves. It covers when hospice helps, how caregivers can give real comfort, and when to call for help. Take it in pieces if that's easier.

Care never ends — at the end of life, its goal simply changes from fighting the cancer to caring for the person.

Medicines and treatments at the end of life can control pain. They can also control other symptoms, such as constipation, nausea and shortness of breath. Some people stay at home during this time. Others are in a hospital or another facility. Either way, services exist to help patients and families. They cover the medical, psychological, social and spiritual parts of dying.

Hospice programs are the most comprehensive and coordinated providers of these services. They typically include nursing visits, and comfort medicines and equipment delivered to the home. They also include counseling, spiritual support, respite breaks for caregivers, and grief support for the family afterward. Palliative care specialists can also be called in at any point in an illness, not just at the end, to help manage symptoms.

Two facts from NCI are worth stating plainly:

• Medicare states hospice can be used as much as six months before death is anticipated. People usually qualify when a doctor certifies one thing. Patients with their type and stage of disease, on average, aren't likely to survive beyond six months.
• Research shows patients and families who use hospice services report higher quality of life than those who don't. And people who have lost loved ones often say they wish they had called hospice sooner.

Hospice is not "giving up." It trades hard hospital weeks for supported weeks, focused on comfort and time together. If you are wondering whether it's time, that is usually reason enough. Ask the care team for a hospice conversation.

Research has shown something useful here. When a person with advanced cancer discusses their care options with a doctor early, their stress goes down and their ability to cope goes up. Studies also show that patients prefer an open, honest conversation about end-of-life choices early in the illness. They are more satisfied when they have it.

Experts strongly encourage completing advance directives. These are documents stating the person's wishes and naming their decision-maker. Complete them while the person can still decide for themselves. If illness moves faster than paperwork, it helps enormously for family caregivers simply to know what their loved one would want. See Making Future Plans With Advanced Cancer.

Most dying patients share a few deep concerns. Fear of abandonment. Fear of being a burden. Loss of dignity, and loss of control. Caregivers answer those fears less with words than with steadiness:

• Keep the person company. Talk, watch movies, read, or just be with them.
• Let them express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
• Reminisce. Be willing to revisit the person's life with them.
• Don't withhold difficult information. Most patients prefer to be included in discussions about issues that concern them.
• Reassure them you will honor their advance directives and wishes.
• Ask if there is anything you can do — and respect their need for privacy.
• Support their spirituality. Let them talk about what has meaning for them. Pray with them if they'd like. Keep meaningful objects close, and arrange visits from spiritual leaders if appropriate.

You cannot say the perfect thing — presence, honesty, and listening are the comfort.

Caregivers at home should ask the person regularly whether they're comfortable or in pain. Contact the doctor, nurse, or hospice team when:

• pain is not relieved by the prescribed dose of pain medicine
• new symptoms start — nausea, vomiting, increasing confusion, anxiety, or restlessness
• previously controlled symptoms return
• the person shows discomfort, such as grimacing or moaning
• they have trouble breathing and seem upset
• they can't urinate or empty their bowels, or they have fallen
• they are very depressed or talk about suicide
• you have difficulty giving medicines
• you are overwhelmed, too sad, or afraid to be with the person, or don't know how to handle a situation

That last group is not an afterthought. Caring for someone at the end of life takes a real toll on caregivers. It causes physical and emotional fatigue, stress, depression and anxiety. Hospice teams support the family as well as the patient. That includes respite care, and grief support before and after the death. Taking care of your own body, mind and spirit is part of caring well. See Caregiver Burnout.

End-of-life caregiving asks a great deal. But you are not meant to do it alone, or unequipped. Hospice and palliative teams exist for exactly this season. The earlier they're involved, the more they can help. Comfort medicines work. Honest conversations lighten the load. And your presence — imperfect, tired, loving — is the thing your person needs most.