What is palliative care?

Palliative care is a specialized form of health care that meets the physical, emotional, and spiritual needs of both an individual facing a life-threatening illness and his or her loved ones. With palliative care, treating physical, emotional, and spiritual suffering is as essential as treating the underlying disease, regardless of whether the disease is curable or not.

When the physical, emotional, and spiritual needs of a terminally ill person are met, the journey towards death can become an enriching experience that gives meaning and completeness to life. By helping people to make choices about their treatment, what services they need, and where they want to be cared for, they are given control and dignity at a time when they most need it.

Family members and friends can also find this an intense and difficult time, which may leave lasting psychological scars. Palliative care provides the support and help needed to not only cope with the changes in their loved one but also to grow in love and friendship with them. Bereavement support is a part of palliative care, as the transition from the death of a loved one to life without them can be very difficult.

What are the goals of palliative care?

Palliative care involves a team of health care professionals who can help terminally and chronically ill people to live the rest of their lives with dignity and healing. The first goal of palliative care is to provide as much physical comfort as possible. It is impossible to enjoy the company of family and friends if you are in severe pain, nauseated, or short of breath.

You have emotional needs - anxiety over what will happen to you because of the illness; psychological needs - unresolved conflicts with a child, brother or sister; and spiritual needs - what is the meaning of your life? The aim of palliative care is to make you physically comfortable so you can think beyond the physical to your emotional and spiritual health.

Why is palliative care necessary?

Western society does not want to talk or think about death. Our medical technology has removed dying and death from our homes, where it used to be a part of life. Death now occurs mostly in the hospital where it can be ignored and minimized. However, during the past thirty years the palliative care and hospice movement has gained strength. It is a movement to rediscover the lost meaning of the health care professional as a person who cares for another person - the whole person, not just their disease.

Unfortunately, palliative care in the hospital or home is often not available to those who need it. It is estimated that 70% of people who experience prolonged and severe pain do so without adequate treatment. Symptoms such as anxiety, depression, shortness of breath, and fatigue are sometimes overlooked or ignored by health care professionals. The greatest fear for those facing the end of their life is being alone. Also, caregivers of people with chronic or life-threatening illnesses often feel alone in their struggle to provide good care. Palliative care strives to deal with the many issues surrounding people who face life-threatening illnesses.

Who needs palliative care?

In the early days of the palliative care movement, the focus was mainly on those dying of cancer. However, today, palliative care is used in the treatment of any life-threatening disease including: cancer, heart or lung disease, AIDS (Autoimmune Deficiency Syndrome), stroke, Alzheimer's disease or ALS, (Lou Gehrig's disease). Currently, there is debate as to whether palliative care should expand its mandate to chronic illnesses, as many more people could then benefit from whole-person care.

When does a person need palliative care?

Palliative care can be helpful at any stage of a life-threatening or chronic illness. In the old view of medical care, the palliative care team became active when the doctor told the ill person that they could no longer be cured. Today, palliative care therapy works side by side with curative therapy.

Who is on the palliative care team?

Palliative care is best managed by a team of health care professionals. Not all teams will have all the members, as described below. However, the team members' functions can overlap, especially if there are only a few members on the team.

  • Physician: The physician is in charge of the medical care of the patient, especially in controlling physical symptoms. The physician may discuss all sorts of symptoms with the patient, including emotional, financial, and spiritual problems. The doctor may then refer to other members of the team for help in these areas.
  • Nurse: The nurse is often specially trained in palliative care, providing an excellent resource for medication and non-medication treatments of physical symptoms. The nurse will often be involved in planning the care of the patient at home and coordinating the necessary services.
  • Pharmacist: If the team has a specific pharmacist involved, this person will be involved in patient and family education about the medications being used by the patient. The pharmacist can prove a valuable resource for both the physician and the nurse when they are seeking treatments for difficult-to-manage symptoms.
  • Social worker: This person is trained in helping people with emotional, social, and financial problems and is very helpful to the patient as well as family members. The social worker is involved with any financial issues related to treatment or discharge home.
  • Chaplain: Many patients find the chaplain to be a wonderful help in reviewing their life and exploring the meaning of life and death. The chaplain is also a resource to the patient, family, and staff in dealing with the related ethical, social, and emotional issues.
  • Rehabilitation therapists: The physiotherapist and occupational therapist are helpful in pain and symptom management with a non-medication approach to therapy. They can be very helpful in recommending adaptations to the home, should the person wish to die at home.
  • Music therapist: For some people, music is a way of expressing themselves and finding meaning in life. The music therapist uses music as a therapy for symptoms such as pain.
  • Volunteer: Volunteers spend time with the patient and family, providing supportive listening as well as helping patients with tasks that they are unable to do due to their illness.

What is a hospice?

Although it is sometimes used interchangeably with palliative care, the term "hospice" refers to a program or organization that provides palliative care at a dying person's home or a site other than the hospital. A hospice involves the same team approach that palliative care does but it is generally provided only for those who are dying.

Romayne Gallagher, MD, 
in association with the MediResource Clinical Team