Dying patients have rights too - Do your staff know what these are?
May 1, 1998 7 minutes read
Dying patients have rights too - Do your staff know what these are?
Hospice may not enter the picture, so home care staff should be prepared
Newspaper headlines often have roared about the rights and ethics regarding dying people in recent years, prompted by political debates over when and how terminally ill patients may choose to die.
Two people in Oregon, an elderly woman and another person who requested anonymity, recently made the debate a personal issue when they chose to end their lives legally under the state's new assisted-suicide law. Authorities reported they were the first people to use the law, which is the first of its kind in the nation.
The woman had been in hospice care and had several generations of her family by her side when she died, according to a March 26, 1998, report by The Oregonian.
Under the law, Oregon physicians may prescribe fatal doses of barbiturates to patients who have less than six months to live. Each case must have a concurring second opinion by another physician. Oregon residents voted twice in favor of the law, and it has so far held up to federal challenges.
While this woman's dramatic decision was well-publicized, there are hundreds of thousands of other terminally ill people who make more subtle choices that will hasten their deaths. Whether they choose to decline food, treatment, or intravenous fluids, Americans often have exercised control over how they will die, and they increasingly are choosing to do so at home.
Hospice isn't right for everyoneWhile some of these patients will choose to enter hospice care, others are more comfortable receiving home care services so that they may continue to see nurses and aides they already know and like.
Therefore, as education manager, it might be time to teach your staff how to fully respect and understand the rights of dying patients.
"Not everyone wants to be referred to hospice, so we also see dying patients," says Sherron Newbery, RNC, BLS, director of staff development for Staff Builders Home Care Agency in Miami Lakes, FL. The agency, which serves the greater Miami area's urban population, is part of a nationwide health care provider with more than 160 offices.
Newbery has conducted several inservices on the psychological aspects of the dying patient.
"I wanted them to think about the family and the patient and treat them as one unit, rather than separating them," Newbery says.
The staff gave great feedback about the inservice, and employees asked for more information about dying patients, Newbery recalls.
Hillside Home Care Hospice in Beaver Dam, WI, also gave a popular inservice on caring for people in the last phase of life, says Pat Trapp, RN, staff educator of the hospital-based, full-service agency, which serves south central Wisconsin.
Trapp says she decided to hold the inservice after seeing staff interest in a seminar held by the American Academy of Bereavement, a division of Carondelet Management Institute in Tucson, AZ. "Many more people requested to go then we were able to send," Trapp says.
So Trapp had the people who attended the seminar present a 11¼2 hour inservice on the topic. The inservice covered the 10 rights of a dying patient, based on Caregiving, a book published in 1997 by MacMillan Press in New York and written by Doug Smith, MS, MA, MDIV, executive director of Kanawha Hospice in Dunbar, WV. (See story on dying patients' rights, p. 71.)
Smith, Newbery, and Trapp offer the following discussion of the important issues about dying patients that might affect home care nurses, aides, and other staff:
· Grieving stages. Elisabeth Kubler-Ross, MD, wrote about the five stages of grieving in her book On Death and Dying, first published in 1969 by Simon & Schuster Trade in New York. These stages still are one of the most popular models for teaching people what to expect when confronted with death or loss. The stages - denial, bargaining, anger, depression, and acceptance - offer ways for patients and their families to cope with grief.
"Denial is a coping mechanism that allows a family and patient [who have been given a terminal medical diagnosis] to carry on life without a great deal of anxiety," Newbery says. "A lot of patients will go from one physician to another hoping to hear something different about their diagnosis."
The dying patient might bargain with God to be good if he or she could live long enough to see a granddaughter get married or some similar future event.
Home care staff might find it difficult to work with patients who are undergoing the anger stage because they may receive unwarranted criticism and anger, Newbery notes. "Sometimes it's easier for the patient to express anger to a person who is visiting than to the family."
Following the depression stage is acceptance, and that's when home care nurses and aides might help the patient and family the most, by encouraging their move into acceptance.
· Losing control: Dying patients lose control of so many different parts of their lives, often including their basic activities of daily living. "Dying patients have had so many choices taken away from them and so much control taken away from them that we need to look at different ways of doing assessments and care plans so that the patient feels more in control," Smith suggests.
One way to do this is to emphasize the patient's strengths and coping styles and how these resources might help the patient deal with problems.
"Many times, we go into an assessment or relationship with patients in which we are basically just feeding them our background and our education, and what we think are our talents, and thinking if we do that, we'll be most helpful to the patient," Smith explains.
But it's the patient's strengths and talents that need to be emphasized, not the home care professional's, he adds. "If I consider listening or counseling as one of my strengths, then I might not notice that the patient considers listening one of her strengths, and by exercising my strengths, I rob her of her strengths."
Smith suggests that nurses ask patients these questions:
- What are your greatest strengths?
- What's your philosophy for getting through life's rough spots?
- What kind of help do you usually give family and friends?
- What will people miss most about you?
- What are some of your contributions to your family and the community?
Help patient clear all communication blocks· Communication blocks. Home care staff should encourage open communication, Newbery says.
"The nurse plays the role of an advocate, and it allows caregivers to speak of their anxieties and fears about what the future will hold and about their sense of loss and sadness," Newbery says.
Nurses and aides might encourage the patient and family to have a life review and reminisce about the things that were important in their lives.
"It's important the patient be allowed the opportunity to continue meaningful relationships and to have time for closure on anything they want to have closure on," Newbery says.
A home care provider might encourage the patient to discuss his or her own internal care plan, such as wishes, hopes, dreams, unfinished business, and family concerns, Smith suggests.
A nurse might also engage the patient in the nurse's care plan by asking the patient to say what he or she would like the nurse to do to help. (See exercise on defining nursing role, above right.)
· Caregiver burnout. Nurses also need to recognize caregiver burnout, which occurs when family members are so busy taking care of dying loved ones' needs that they forget to take care of their own needs.
"So it's important to reassure the family that the patient will be kept comfortable and pain-free and make referrals for pain medication or to hospice if the patient wants that," Newbery advises.
· Lack of touching. People sometimes are afraid to touch dying patients for fear of hurting them and other reasons, although these patients need touch more than ever during their last days.
Nurses should assess whether touching is appropriate, and if it is, they could touch in simple ways, such as holding hands or giving a back rub or foot massage, Smith suggests.
"There have been studies on touch that show the need for touch typically increases during times of social isolation, and that's essentially the situation of the average dying person," Smith says.
· Non-responsive patient. Often near the end, the patient enters a coma-like state and can no longer respond to the family or home care staff. But this doesn't mean the staff should behave as though the patient is not there, Trapp says.
"When you enter the room, always address the client by his or her name first because the sense of hearing is the last sense to go," Trapp says. "And also remember that you are modeling behavior for the family and visitors."
If a relative unwittingly remarks within the patient's presence, "My God, he looks awful," then the nurse should pull the relative aside and tell him or her that the hearing is the last thing to go, so everyone needs to speak as though the patient can hear them, Trapp explains.
Nurses and aides who need to move a non-responsive patient should still ask for the patient's permission, Trapp says. "Look for a reaction and say, 'I'm about to move you, is that OK?' and then look to see if the patient looks more comfortable after the move, and then you thank the person when leaving."
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