A Patient's 10 Last Rights
A Patient's 10 Last Rights
When a home care nurse or aide opens a new case, it's sometimes easy to forget the patient's needs in the rush to meet the clinical needs, the documentation needs, the payer's needs, and the staff's need to stay on track with a busy schedule.
However, with dying patients, it's especially important to attend to their needs.
"People who are dying have so little that they can grasp onto that whatever will give them self-esteem, and self-worth needs to be emphasized," says Doug Smith, MS, MA, MDIV, executive director of Kanawha Hospice in Dunbar, WV. Smith has developed "A Patient's Last Bill of Rights" to address those needs.
Hillside Home Care Hospice of Beaver Dam, WI, held an inservice for nurses, aides, and other staff about the 10 rights of dying patients, based on Smith's bill of last rights.
These 10 rights are as follows:
1. Right to be in control. Home care staff can ask patients to help in designing the care plan and also ask the patient how the nurse or aide or therapist can do a better job. "Ask them, 'Am I doing too much for you? What can I do differently?'" Trapp suggests.
2. Right to have a sense of purpose. Dying patients have lost their jobs and can no longer fulfill their role in the family, so they need some purpose to replace it. Trapp suggests home care staff help a patient use his or her remaining strength to give someone advice or to help the family make some plans. Other examples might be to suggest the patient produce a videotape for children or grandchildren.
3. Right to reminisce. Everyone has moments of pride and pleasure in their lives, and a nurse or aide might help the patient uncover these moments. "Ask questions to facilitate it," Trapp suggests. "The client may need to talk about painful memories in order to have closure, but you don't have to solve the problem, you're just there to listen and comfort."
4. Right to be comfortable. Not all the pain can be taken away, but the nurse and aide can do a great deal to help a patient become comfortable. Besides medications, they could play relaxation tapes or music, give the patient comfort foods, do a hand or foot massage, and try other techniques.
5. Right to touch and be touched. "Assess before you express," Trapp says. "Ask them, 'Would you like to have a hug?'" Some people might have difficulty asking for this, so set up a sign they can use, such as holding up their second fingers means they want a hug or massage.
6. Right to laugh. "People think because someone is dying, they have to be serious all the time, but dying people still have the need to laugh," Trapp says. Home care staff could suggest the patient let them put up a sign that reads, "Laughter allowed in here," if it would help make people feel more at ease. "People don't want to think about dying every minute, so laughter helps."
7. Right to be angry and sad. Not every patient comes to terms with everything regarding his or her death, so home care staff should allow the patient to express anger, especially if that's a coping mechanism. "Every family doesn't resolve all the conflicts also," Trapp says. "It's not wrapped up in 30 minutes with commercials."
8. Right to have a respected spirituality. Different people have faith and belief systems that are not necessarily related to religion. "When talking about spirituality, be careful of your wording, and don't assume you know the client's spirituality," Trapp advises. "It could be a devout religion that has certain beliefs about heaven." Or it could be they have no particular religion but still consider themselves spiritual, Trapp adds.
9. Right to feel a sense of family and connection. The home care or hospice staff can become a part of the family connection. But they need to ask the patient and family what they need and never assume they already know the answer. "The families are under tremendous stress, so they will rise to great heights and sink to new lows," Trapp says.
10. Right to hear the truth. Loved ones often try to protect each other, and people can either accept the truth, deny it, or cope with it. If, for example, an aide is giving a patient a bath, and the patient says, "I'm really losing weight," the aide can confirm this, Trapp says. don't need to deny this when it's the truth." But on the other hand, if the patient says, "I think I'm dying," the aide can say, "Why do you think that? What makes you say that?" The idea is to give the patient a chance to express his or her feelings and to confirm what the patient already knows but not to mislead or lie to the patient to avoid discomfort, Trapp says.
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