Comfort-Focused Care: What It Means

"Comfort-focused care" is a description of a goal, not a single service. It means the plan is now built around how a person feels and what they can still do, rather than around shrinking a tumor.

It is active care. Symptoms get assessed, medicines get adjusted, equipment gets ordered, and someone is on call. What changes is the question being asked at every decision: will this make the person feel better?

The National Cancer Institute is direct about the fear underneath the phrase: "Choosing hospice care doesn't mean that you've given up hope."

Palliative care is "care meant to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer." It is given by palliative care specialists who have training or certification in it, usually in a team. It happens in hospitals, outpatient clinics, long-term care facilities, and at home. It "may be provided at any point during cancer care, from diagnosis to the end of life." Crucially: "When a person receives palliative care, they may continue to receive cancer treatment."

Hospice care is a Medicare benefit with rules attached. It begins "when curative treatment is no longer the goal of care and the sole focus is quality of life." To enroll, your hospice doctor and your regular doctor, if you have one, certify that you are terminally ill with a life expectancy of 6 months or less, and you sign a statement choosing hospice instead of Medicare-covered treatment for that illness.

Comfort care is the everyday phrase for the goal both of those serve. It is what a hospital team means when they write "comfort measures" in the chart.

You can have palliative care for years while still on chemotherapy. Hospice is a narrower, later, more structured version.

The National Cancer Institute lists four areas.

• Physical: pain, fatigue, loss of appetite, nausea, vomiting, shortness of breath, and insomnia.
• Emotional: depression, anxiety, and fear.
• Spiritual: help exploring beliefs and values in order to find a sense of peace.
• Practical: financial and legal worries, insurance questions, and employment concerns.

The National Institute on Aging groups end-of-life comfort care the same way: physical comfort, mental and emotional needs, spiritual needs, and practical tasks.

This is the part families most want spelled out. The following are the National Institute on Aging's specific measures.

Breathing. Shortness of breath is common near the end of life. Raise the head of the bed, open a window, use a humidifier, or run a fan to move air in the room.

Mouth, lips, and eyes. Keep lips moist with lip balm. Clean the mouth with a soft, damp cloth. Use ice chips, or wipe inside the mouth with a damp cloth, cotton ball, or a treated swab. Dab an eye cream or gel gently around the eyes.

Skin and pressure sores. Staying in one position puts constant pressure on sensitive skin and can cause painful bed sores. Turning the person in bed every few hours helps prevent sores and stiffness. Foam pads under pressure points help too.

Digestion. Nausea, vomiting, constipation, and loss of appetite are all common. Medicines can control nausea and vomiting and relieve constipation. Offer favorite foods in small amounts. Do not force a dying person to eat.

Temperature. Hands, arms, feet, or legs may feel cool. Add a blanket and raise the heat if the person seems cold, and take blankets off if they seem too warm. Avoid electric blankets, which can get too hot.

Fatigue. Energy runs low. Keep things simple. A bedside commode and sponge baths in bed save effort for things the person actually wants to spend it on.

Two worries come up in almost every family conversation, and both have clear answers.

On addiction: the National Cancer Institute distinguishes tolerance from addiction. "Tolerance of an opioid is a physical dependence on it. This is not the same as addiction (psychological dependence)." The National Institute on Aging goes further for people who are dying, saying care "should focus on relieving pain without worrying about possible long-term problems of drug dependence or abuse," and adds: "Don't be afraid of giving as much pain medicine as is prescribed by the doctor."

On hastening death: "Some patients and family members worry that the use of opioids may cause death to occur sooner, but studies have shown no link between opioid use and early death."

Practical details. Opioids are given on a regular schedule to keep pain from building, with extra doses available for breakthrough pain between scheduled doses. Morphine is the most common opioid for cancer pain. Non-opioids such as acetaminophen and NSAIDs help mild pain and are often added to opioids. Adjuvant drugs, including antidepressants, anticonvulsants, corticosteroids, and bisphosphonates, treat pain that opioids alone do not reach. Radiation therapy and nerve blocks are also used for pain, not only for treating cancer.

Constipation is the side effect that ruins comfort fastest. Opioids slow the gut. Expect a prevention plan from the start, not a rescue plan later.

Pain is easier to prevent than to relieve. That single sentence changes how families use the medicine.

These get bundled together, and they should not be.

• A DNR order says CPR will not be attempted if the heart and breathing stop.
• A DNI order says no breathing machine.
• A DNH order tells nursing home staff not to send the person to a hospital.
• A POLST or MOLST form is a medical order that clinicians can act on immediately in an emergency. It sits alongside an advance directive rather than replacing it.
• A living will says how you want to be treated if you cannot speak for yourself. A durable power of attorney for health care names the person who speaks for you.

You can choose comfort-focused care and still want to be hospitalized for a fixable problem. You can have a DNR and still be pursuing active treatment. Say which combination you want, and get it written down. A lawyer can help with advance directives but is not required.

Hospice care is usually given at home, and can also be given in a hospice inpatient facility, a participating hospital, or a skilled nursing facility. A hospice nurse and doctor are on call 24 hours a day, 7 days a week. You and your family build the plan of care with the provider. Grief and loss counseling for the family is part of the benefit.

Medicare pays for four levels of care:

• Routine home care, the standard day-to-day level at home.
• Continuous home care, mainly nursing care at home, used only during brief periods of crisis to keep someone at home.
• Inpatient respite care, up to 5 consecutive days in an approved facility to give the caregiver a rest.
• General inpatient care, in a facility, for pain control or acute symptom management.

You pay nothing for hospice care from a Medicare-approved provider, up to $5 per prescription for outpatient pain and symptom drugs, and 5 percent of the approved amount for inpatient respite. Room and board is not covered. The benefit runs in two 90-day periods and then unlimited 60-day periods, with recertification each time.

Nothing here is permanent. You can stop hospice at any time, and you can go back at any time. You can change hospice providers once in each benefit period. If you name your own doctor as attending, you keep seeing them.

• Call your care team the same day if pain is no longer held between scheduled doses, breathlessness frightens the person and a fan and a raised bed head are not easing it, or they cannot be woken as usual after a dose change.
• Call your care team within a day or two if several days pass with no bowel movement while opioids are being taken, vomiting keeps medicines from staying down, or the skin over a pressure point turns red or breaks open.

• Palliative Care in Cancer — National Cancer Institute
• Care Choices in Advanced Cancer — National Cancer Institute
• End-of-Life Care for People Who Have Cancer — National Cancer Institute
• Cancer Pain (PDQ) Patient Version — National Cancer Institute
• Last Days of Life (PDQ) Patient Version — National Cancer Institute
• Providing Care and Comfort at the End of Life — National Institute on Aging
• Advance Care Planning: Advance Directives for Health Care — National Institute on Aging
• Hospice care coverage — Medicare.gov
• Medicare Hospice Benefits booklet — Medicare.gov
• Hospice levels of care — Centers for Medicare and Medicaid Services