Palliative care, also called comfort care, support care, or symptom management, is any care that is used specifically for improving your quality of life by relieving the pain and other symptoms associated with a serious illness or its treatment. It is typically thought of as something recommended when a cure is not likely, either because your treatment is no longer effective or you have stopped any treatment for your condition.
Palliative care is not only appropriate for those with life-threatening or terminal illnesses, it is used for anyone with a serious illness that needs relief from severe pain, significant symptoms, and psychological effects associated with the illness or its treatment. This may include people with heart disease, kidney failure, chronic lung disease, AIDS, Alzheimer’s, multiple sclerosis, and amyotrophic lateral sclerosis.
Most often, palliative care for patients with a terminal illness is provided by an organization called hospice. Hospice specializes in all aspects of support and palliative care, including symptom control and other comfort care, individual and family counseling, support services, and spiritual guidance.
Although you may associate palliative care with pain medications and sedation to control pain, there is much more to it. While controlling pain may be part of your palliative care, there are many other medical and caretaking issues that make it difficult to care for you when you have a terminal illness. These issues will often multiply and get worse as conditions progress.
Not all of these issues are easily relieved with medication and will require specific other actions on the part of your caretakers.
- Even if you are not trying to cure your illness, palliative care can involve surgery, chemotherapy, or radiation therapy to treat severe symptoms or an immediate life-threatening situation. Circumstances may require blood tests, X-rays, and other diagnostic tests to help find the source of these symptoms.
- If you are having difficulty swallowing you may need liquid medications and a liquid diet.
- Constipation from pain medications may require bulk or stimulant laxatives or medication to reverse this effect.
- Nausea, vomiting, or diarrhea from chemotherapy is frequent and can be managed by medications.
- Weakness, loss of appetite, weight loss, or wasting from your illness or chemotherapy can be managed by special diets, enteral feeding (tube feeding), and/or medication.
- If you are immobile you must be turned to change positions every 1 to 2 hours, usually about 30 minutes after your pain medicine is given, to avoid skin problems from immobility, such as pressure ulcers (bedsores).
- Coughing, shortness of breath, or labored breathing can frequently be relieved by position changes to improve breathing or manage secretions, but may require oxygen.
- Bladder problems or other bowel problems, such as losing control of urine and stool, may require layers of disposable waterproof pads or adult diapers and additional hygiene care. Depression and anxiety are psychological diagnoses and are quite common. In some cases, they can be relieved by counseling and/or medication.
- If you have episodes of delirium, psychosis, or mental confusion, reminders of who you are and what day and time it may help you stay oriented. Visitors should be there when you are most alert to benefit the most from their visits.
- Your illness or treatment may cause difficulty sleeping, sleeping more, or difficulty waking up, all of which might be managed by changes in treatment.
- Restlessness is frequently due to pain or discomfort, which can be treated.
- Sudden muscle movement, such as jerking of hands, arms, legs, or face are common, especially if you are startled, so your visitors and caretakers should avoid sudden noises or movements.
- You may have minor issues that need other comfort care, such as lip balm, ice chips, control of your secretions, blankets, and changes in lighting.
There are numerous other things that contribute to your comfort and sense of well-being. Palliative care also encompasses looking for and managing emotional, social, and spiritual issues that usually go along with serious illness. It is also crucial for your family and other loved ones to be involved to help them cope with your illness as well.
Palliative care involves a large team of medical professionals who will care for you and contribute to teaching your family how to care for you and manage the burden of caregiving.
- Physicians, including surgeons, and advanced practice nurses or physician assistants will provide palliative medications and other needed medical care treatments, make appropriate referrals to other healthcare professionals, and sign any Physician Orders for Life Sustaining Treatment (POLST), and the Do Not Resuscitate (DNR) Order.
- Nurses, healthcare aides, and home health aides.
- Nurses will carry out some of your treatments and help you with day-to-day medical issues, including home nursing visits if necessary.
- Health aids can help with bathing and other routine care needs.
- Pharmacists frequently consult with the physicians about the best choice of medications.
- Psychologists, bereavement professionals, and other counselors will work with you and your family to cope with your current situation and after your death. They can help caregivers with their feelings about taking care of you, such as frustration, resentment, anger, guilt, depression, and anxiety.
- Social workers will make sure you get all the services you need, including finding support groups and other opportunities for social interaction for you, arranging for transportation, help with home chores, assistance with feeding, shopping and meal preparation, and respite care and other assistance. They can also help you get assistance with your financial, work, and insurance issues, as well as obtaining and filling out advance directives and other forms.
- Dietitians can create a diet plan that will help you stay as healthy as possible.
- Physical and occupational therapists may be needed to help with some of the physical consequences of your condition and can get the equipment needed to keep you comfortable, such as a hospital bed, braces, a walker or a wheelchair.
- Clergy are available for those that need spiritual guidance.
- Trained volunteers are available to perform other important tasks such as, listening to your concerns, being a comforting and supportive presence, sharing your hobbies, or running errands.
In addition to the services described above, alternative and complementary therapies, such as healing touch/massage, meditation, yoga, aroma therapy, music therapy, and pet therapy may be available.
Your team will appoint a team leader who will be responsible for coordinating your care and assuring good communication among all the members and with you and your family. You should give this person and other appropriate members of your team copies of your advance directives.
Palliative care can take place anywhere, depending on your situation and preferences, such as hospitals, nursing homes, hospice facilities, assisted living, your home, and out-patient clinics. Working together allows your team to coordinate your care so that you can move easily from one location to another as necessary, which may prevent multiple hospitalizations or emergency room visits.
Choosing Location of Care When You Are Dying” section has details on the pros and cons of each location.
Hospice is both a specific healthcare service and a philosophy. Its primary goal is to do everything possible to improve the quality of your life and maintain your dignity when you have a terminal illness. In order for this to be effective, your loved ones must be involved and recognize that everything possible does not need to be done to keep you alive. Hospice encourage you to guide your own treatment, so you will remain in control.
You might decide to take more personal action around the last six months of your life. This is usually after deciding to stop treatment of your terminal illness or other life-sustaining treatment, often after discovering it is not working. You may require a referral from your doctor in order to be accepted into hospice.
Hospice organizations have their own staff, including a physician specializing in hospice care. They will work with your own healthcare providers and primary caregiver as part of the team. Although many hospice organizations have their own facility, they prefer home treatment whenever possible. You can usually reach someone in your hospice at any time.
Using hospice for palliative care has many benefits, most of which we have gone over, with a few drawbacks.
- An integrated comprehensive, interdisciplinary care team.
- 24 hours a day availability, including weekends and holidays, and access to hospice professionals when assistance is needed.
- Less out-of-pocket expenses for medications, durable medical equipment, and medical supplies.
- They can help you avoid unwanted hospitalizations, medical treatments, and procedures.
- In-home hospice care costs less than hospice care in other locations.
- A potential disadvantage is the restrictions placed on some care, usually related to the flat per-day amount of money from which all medical expenses must be paid.
- Some diagnostic tests, such as blood work and X-rays may be denied or become your financial responsibility.
- Hospitalization is discouraged and not always covered. The Medicare hospice benefit does have provisions for short-term hospital stays for symptom management, but there may be limited reasons to allow admission.
- Participation in experimental treatments or clinical trials is not allowed because they are considered life-prolonging.
- Even nasogastric or “feeding” tubes, if you have not prohibited them in your advance directives, may be considered life-prolonging and may not be covered.
Unfortunately, not all hospice groups provide top-quality care or all of the care you may need. Many hospice groups bill by the day, not by the services provided, so have higher profits when less services are provided. A federal report published July 2018 found that, while you generally can count on hospice to provide good comfort care, some hospice providers do not. They also found that, in order to get more from insurance payments, they sometimes provide unnecessary care or bill for care that was not done.
Your hospice organization should meet the National Hospice and Palliative Care Organization’s (NHPCO) Standards of Practice for Hospice Programs. In addition, it must meet state licensure requirements to deliver care, comply with federal regulations in order to be approved for reimbursement under Medicare, and undergo periodic inspection to be sure they are meeting these regulatory standards.
Most insurance policies, including Medicare, pay for part of the cost for hospice. Unfortunately, if your insurance does not, you are more likely to end up in an emergency room and to get emergency medical interventions.
For hospice care, The Medicare Hospice Benefit program requires you to be diagnosed with a serious illness, have certification from a doctor that you have six months or less to live, have no response to treatment or waive the standard Medicare benefits for treatment of your illness, and/or have a Medicare-approved hospice provider.
- Medicare puts time limits on the duration of hospice care, has criteria to meet to apply for it, will not cover all the expenses. For example, Medicare may limit hospice care to 60-90 days and require recertification to renew it. You will usually be renewed as long as you still meet the Medicare requirements.
- Medicare will not cover room and board at healthcare facilities, emergency care such as ambulance fees or emergency room costs, outpatient prescription drugs (unless it includes plan D), or treatment to try to cure your illness.
Medicaid, a federal and state program that helps with medical costs for people with limited income and resources, has similar requirements for hospice, but also covers room and board, outpatient prescription drugs, and long-term care.
- Ask an Expert. National Hospice and Palliative Care Organization.
- CaringInfo worksheet to help you in selecting the best hospice for you
- Choosing a Hospice: 17 Questions to Ask. Hospice Foundation of America.
- Finding a Hospice Program. American Cancer Society.
- Hospice. everplans website.
- Hospice Care: A Consumer’s Guide to Selecting a Hospice Program. National Hospice and Palliative Care Organization.
- Hospice Care and the Medicare Hospice Benefit. National Hospice and Palliative Care Organization
- Hospice Directory. Hospice Foundation of America.
- Hospice Foundation of America
- How to Find a Quality Hospice. AARP website. Posted: June 27, 2019.
- Living with Serious Illness. National Hospice and Palliative Care Organization website.
- Myths About Dying. The National Council for Palliative Care
- National Hospice and Palliative Care Organization
- The Dying Process – A Guide for Family Caregivers. National Hospice and Palliative Care Organization website.
- Questions to Ask Your Doctor About Hospice Care. American Cancer Society.
- Video – Hospice: Something More