Health Literacy and Palliative Care Workshop Summary (2016) / Chapter Skim
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5 Integrated Care Teams
5 Integrated Care Teams
Pages 51-70
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From page 51... ...
Children's Hospital and Senior Pastor of the Resurrection Baptist Church, discussed how to integrate spiritual care into palliative care. Carol Levine, Director of the United Hospital Fund's Families and Health Care Project, provided a family caregiver's perspective, and John Cagle, Assistant Professor at the University of Maryland School of Social Work, spoke about the role that social workers play in palliative care.
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From page 52... ...
The one thing that has been missing from the day's presentations, he said, is any mention of a person's life before they became ill. To truly understand patients and their needs from the health care system, it is necessary to understand the histories that are integral to them, explained Freeman.
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From page 53... ...
"Once you have gotten those answers, find peace with it, and then leave it alone. It is not to be dealt with in the context of a caregiver." It is important for health care providers to nurture spiritual integrity because they will be more empathic in their approach when their issues are not their patient's issues, he explained.
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From page 54... ...
It is a question that affirms the individual's humanity, and if we do that we have been good caregivers." A FAMILY CAREGIVER'S PERSPECTIVE2 Carol Levine approaches the subject of palliative care from the dual perspective of someone who directs a project that works with family caregivers and who for 17 years was the caregiver for her late husband, who suffered a traumatic brain injury that left him quadriplegic and with a severe cognitive impairment. She said that when she was listening to Beverly Alves and Diane Meier, she could feel anger welling up inside her as she remembered all the things she dealt with during her years as her husband's caregiver and saw that the situation for family caregivers has changed little over the past 20 years.
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From page 55... ...
There are palliative care doctors, who offer specialized medical care. Home care nurses think they are providing palliative care but they are really providing ordinary care for sick people.
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From page 56... ...
"Palliative care as it is practiced today is not chicken soup and a pillow," said Levine. Family caregivers are not getting the proper training to manage a morphine drip, a peripherally inserted central catheter, and other complicated procedures, and Levine questioned how that was acceptable practice.
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From page 57... ...
Many state services health insurance generally covers Medicaid plans and private health palliative care services. insurance plans pay for hospice.
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From page 58... ...
Health literacy, palliative care, and social work intersects in five places, said Cagle. These include • Careful attention to language • Addressing myths and misperceptions • Advocacy for social justice and vulnerable populations 3 This section is based on the presentation by John Cagle, Assistant Professor at the Uni versity of Maryland School of Social Work, and the statements are not endorsed or verified by the Academies.
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From page 59... ...
R02922 Figure 5-1 Physical vector editable Environment 10% Health Care Environmental quality Access to care 20% Built environment Quality of care Socio-Economic Factors Health EducaƟon 40% Behaviors Employment 30% Tobacco use Income Diet & exercise Family/social Alcohol use support Unsafe sex Community safety FIGURE 5-2 Social determinants of health. SOURCE: Presented by John Cagle on July 9, 2015.
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From page 60... ...
Individuals on the health care team often lack the time to solicit information from and provide proper explanations to family members, suggesting the need to better manage the way team members work to meet family needs. Metaphors may seem useful and are well intended, but metaphors such as "fighting against cancer" can put patients in a position where they feel they are fighting against themselves, producing an intrapsychic dilemma.
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From page 61... ...
Communication is key to addressing health literacy, and while it is impossible not to communicate in some way, not all communication is effective or appropriate, he emphasized. Health care team members need to pay attention to nonverbal cues and the way they communicate expectations.
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From page 62... ...
: "The relationship between the skills of persons receiving care or treatment and the professionals or systems that are providing the care and treatment." She favors this definition because it emphasizes the intersection of how well the patient takes in information with how well that information is delivered. That intersection, she said, is 4 This section is based on the presentation by Ginger Marshall, National Director of Pallia tive Care for Hospice Compassus and President-Elect of the Hospice Palliative Nurses Asso ciation, and the statements are not endorsed or verified by the Academies.
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From page 63... ...
Moreover, she added, when a patient's condition requires palliative care, health literacy also affects autonomy and a patient's ability to give informed consent regarding what they want and do not want in terms of care. Nurses, said Marshall, provide patient education and care for a diverse population across the life span in multiple health care environments.
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From page 64... ...
In fact, said Marshall, the Hospice & Palliative Nurses Association's Advancing Expert Care initiative emphasizes health literacy. It has created patient and family teach sheets, many of which are available in Chinese, English, and Spanish, as well as tips sheets for nursing assistants and quick information sheets for nurses that provide brief overviews of diseases that can be shared with patients and families.
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From page 65... ...
In closing, Marshall recommend that nurses, physicians, and other hospice and palliative care team members receive communication training, and that such training should be extended to all health care providers regardless of their role or specialty. Current materials and resources related to health literacy should be revised to include content related to chronic illness and end-of-life care.
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From page 66... ...
"I have never worked with a palliative care team that makes a plan outside of the presence of a patient or family members, and that does not give patients or family members control over who gets to help with the decision-making process," said Marshall. As an example, Marshall recounted a case in which she saw a patient in a pulmonary clinic and the social worker who was working with her picked up on the fact that Marshall had missed the patient's concern that her daughter, who was living with her, would be involved in decision making.
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From page 67... ...
He also noted that if a health care system does not start engaging every employee -- the chaplains, social workers, environmental service people, cafeteria workers, and others -- in the holistic care of the entire family, it will sow the seeds of its own destruction because another health care system will do those things. Steven Rush from UnitedHealth Group commented that the definition of health literacy used for this workshop focuses on getting and understanding information to enable appropriate decisions, and he wondered if there is a role for the palliative care team to help people make appropriate decisions.
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From page 68... ...
Cagle thought that it would be difficult to conduct a broad-based public education campaign on pain management but that targeting people who are in pain or caregivers that are caring for patients in pain can be effective. He cited a recent study that he and his colleagues conducted on addressing barriers to pain management and hospice with family caregivers (Cagle et al., 2015)
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From page 69... ...
INTEGRATED CARE TEAMS 69 also thought that perhaps someone who is technologically savvy could be part of the team. Marshall seconded Levine's statement about pharmacists and said they are often skilled at education and teaching.
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