Seriously ill people and their families may feel swept along by the fatal illness and the various treatments, as if they have no control over the events. Some people seem to prefer this sense of having no control because it relieves them of the responsibility of deciding what should be done. Other people prefer to determine all aspects of their care, sometimes even including the specifics of their funeral and burial.
Honest, open communication between patients and doctors about preferences for care at the end of life helps to ensure the best possible quality of life during a fatal illness. The doctors provide a candid assessment of the likely benefits of end-of-life treatments and their disadvantages, including effects on quality of life. People express what they do and do not want to experience. People have the chance to state their preferences for treatment, place limits on that treatment, express wishes concerning where they want to die and what they want done when death is expected, and decide whether they want to donate organs after death.
Typically, people who become seriously or terminally ill receive care from their regular doctor, with whom they may have a long-standing, trusting relationship. However, there are some exceptions. For example, some doctors may object to using terminal sedation or high doses of opioids to control pain. Both of these treatments can make dying more comfortable but have the potential to hasten death slightly (although they sometimes even help the person live longer). If a person prefers such treatments and their doctor cannot provide them, the person may choose to obtain medical care from another doctor.
Sometimes a hospice team can provide such care and coordinate care with the dying person’s regular doctor. Hospice is a program of care and support for people who are very likely to die within a few months. Hospice care focuses on comfort and meaningfulness, not on a cure. People can receive hospice services in their home or in a health care setting.
Choosing a health care team for end-of-life care
When choosing a doctor (or a whole care team), a person with a potentially fatal condition (including advanced old age) should ask several questions about care at the end of life:
- Does the doctor offer to treat symptoms fully (palliative care) at the end of life and provide strong opioids to fully manage pain?
- Does the doctor have substantial experience caring for dying people?
- Does the doctor care for the person until death in all settings—hospital, nursing home, or home?
- Is the doctor flexible enough to accommodate the person’s prioritized treatment options for end-of-life care?
- Is the doctor familiar with home health, supportive services, and therapy services in the community—who qualifies for them, how they are paid for, and how to help people and families get more intensive services when needed?
In some cases, what a doctor may lack in experience is offset by a trusting, long-standing relationship that exists between the doctor and a patient and family and by the doctor’s willingness to consult other experts.
A system of care includes a care delivery program made up of doctors, a hospital, a nursing home, and home health care agencies. Systems of care may vary in their costs, insurance reimbursements, and patient deductibles and copayments. Asking questions of doctors, nurses, other patients and families, social workers, and case managers can help a person find the best available clinical team and their network, which makes up a system of care:
- What treatments are more readily available in different networks?
- What is the usual practice in providing information about the merits of possible treatments?
- How can a person talk to other patients and families who have been treated there?
- Are any experimental treatments available?
- Does the team regularly attend to patients and families through the end of life?
- Are they proud of ensuring reliable comfort and dignity and care that matches patient and family preferences?
Choosing to donate organs after death
The dying person may wish to donate organs after death. This decision is best made by the ill person before death occurs and with the family in accord.
In general, people dying of a chronic illness can donate only corneas, skin, and bone. People without chronic illness who die more suddenly can usually donate more organs, such as kidneys, liver, heart, and lungs. To become an organ donor, the person usually needs only to sign a standard organ donor card and to let the doctor and family know.
Common concerns that may prevent some people from becoming organ donors can be allayed: Organ donation usually does not affect the appearance of the body at the funeral and does not cost the family any money. Also, organs are never taken until after death. The doctor should know how to arrange for organ donation, often even for people who die at home or in a nursing home.