The word palliative means to “lessen the severity of without curing; to alleviate.” This type of care is considered to be a form of pain management, also referred to as supportive care, given throughout all stages of cancer or other life-threatening diseases. For example, a person who is receiving cancer treatment may experience nausea and vomiting as a side effect. Treating the symptoms of nausea and vomiting throughout chemo or radiation is considered to be palliative care, easing the symptoms and side effects, but not providing an actual cure for the disease. Aside from easing physical pain, one of the primary goals of palliative care is to help improve the quality-of-life for a loved one and their family. By trying to incorporate the total person in meeting their social, emotional and spiritual needs, palliative care is meant to be a relief of symptoms, rather than a cure. The comfort level of a loved one and that of their family is the main focus of palliative care. By enabling the caregiver to play an important role in easing their loved one’s pain (physically, mentally, and emotionally) and with a loved one having their pain eased for them, both will find that their quality of life will greatly improve.
Palliative care, used throughout the course of a disease like cancer, is generally increased once there are no new treatment options left, and during the last year of life. Some of the more common symptoms that palliative care can help relieve and control include: pain; difficulty breathing; loss of appetite and weight loss; fatigue; weakness; problems with sleep; anxiety and depression; and confusion. Aside from easing the physical aspects of a life-threatening disease, palliative care also provides: advance care planning (for someone who has a few months to a year to live), social support for both caregiver and loved one, complex care (someone who may have a history of mental problems or substance abuse, along with a life-threatening disease), and specialized care during the final days and hours. When someone is given a few months to a year to live, it’s important to begin the process of advance care planning. A doctor will determine what the palliative care options are (including hospice), and can be the one to introduce you and your loved one to a palliative healthcare team. At this point, an open discussion is needed between caregiver and loved one regarding the option of palliative care, how the person feels about palliative care, and what their preferences are when it comes to their end-of-life care. Once palliative care has been decided upon, the palliative care team can then begin to assess the needs of the loved one, comparing their requests with those of the caregiver. Some of what will be discussed may be rather uncomfortable for everyone, but it’s important to move forward with this aspect, since this will be the only way to know the true wishes of a loved one. The palliative care team will discuss the need for advance directives, such as a living will, power of attorney for healthcare (sometimes referred to as the durable power of attorney for healthcare), and whether or not resuscitation will be required and/or requested at any point in their care (a “DNR” order means “do not resuscitate”; it’s signed by the person, and kept in their chart or on file with their medical team). These directives also include information about where the person wishes to die, who will serve as the healthcare proxy (a caregiver who knows the final wishes of a loved one, and sees to it that their wishes are respected), as well as a loved one’s wishes regarding whether or not they want to donate their organs or have an autopsy.
The social support offered through palliative care includes making sure that a person is receiving attention from their family, community, and from their religious or spiritual leader/family. The palliative care team will also ensure that a person’s home environment is safe and comfortable, that they have a caregiver to help them at all times, and that transportation is available for hospital or doctor visits. They will also make sure that caregivers and loved ones have the financial resources needed, and give caregivers the support and education they will need in order to provide good, consistent care, and providing them with help for their own needs and stresses.
Some people may need a more complex form of care from the beginning. This would include people: with a past history of psychiatric problems or substance abuse problems; who had difficulty coping during earlier cancer treatment; with no social support, or no one to turn to for emotional support; who have young children in the family; who have suffered from multiple losses; with financial problems; who have problems thinking clearly; who have other serious, medical problems; who have communication problems (difference in language, or are hard-of-hearing); who have family problems; or who have repeatedly requested physician-assisted suicide. Whatever the situation, the palliative care team will work with the appropriate mental healthcare professionals, medical professionals, social services, or interpreters to make sure that their needs are met.
During the final days and hours, the doctor and palliative care team will: watch the patient closely; provide privacy; stop all diagnostic testing; avoid needle sticks; remove IVs, catheters, and implanted devices; allow loved ones and their family uninterrupted time together; ensure that the family understands the death process and what to expect; encourage visits by children if it’s okay with loved one; make sure the family is available around-the-clock; make sure that caregivers understand the advance directives of their loved one and that these directives will be honored; and consider sedation for relief of uncontrolled symptoms. After a loved one has died, the palliative care continues, making sure that the body is treated in a culturally sensitive and respectful way, that the family has time with the body, that funeral arrangements are made and finalized, and that all healthcare professionals and insurance companies are notified. For the family, the palliative care team will help provide support with their grief by identifying available help or community grief/bereavement groups, and will make sure that family members are receiving the help needed in order to cope with the death.
It’s important for caregivers and their loved ones to know that such a program exists, that it can help them through every difficult stage; not only helping the one with the life-threatening illness, but also helping the caregiver. Palliative care can ease the confusion that may come from an overload of too much information and too many choices by concentrating on the entire person – their body, mind, and spirit – and the personal well-being of the family caregiving team as well.