Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life (2015) / Chapter Skim
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Appendix C: Summary of Written Public Testimony
Appendix C: Summary of Written Public Testimony
Pages 443-454
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Only aggregated responses without personally identifying information were presented to the committee and placed in the public access file for this project. Respondents were also told that their responses might be referenced or quoted in this report.
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Some individuals who were themselves living with serious illness and/or likely approaching death also provided their own perspectives. The illnesses and conditions described included Alzheimer's disease, various types of cancer, heart failure, dementia, kidney failure, liver failure, Parkinson's disease, AIDS, and bone fractures.
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health care system could im prove care of individuals with serious progressive illness? Additional Comments Question 6: If you have additional thoughts about improving research, care, and education for or about individuals with a serious illness or medical condition who are likely approaching death, or if you would like to share information related to the committee's work, please use the space provided below to do so.
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From page 446... ...
choices." Health care providers and nonproviders alike commented on the barrier presented by the "healing culture" of medicine and the belief by providers that death means failure. Said a critical care physician, "One of the biggest challenges I face in taking care of patients with advanced progressive illness is the unwillingness of some (not all, probably not even many)
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It's dizzying, confusing, and emotionally difficult to navigate the medical establishment and to almost literally translate what they are telling patients and families." One respondent with a serious illness described his/her perception that providers were not willing to talk about what will happen. Another wrote, "I have not seen lack of willingness to provide great end of life care, but rather the failure to point out that the end of life is approaching." Another important issue raised by one caregiver was the problem of ageism and stereotyping of the elderly and its effect on care, including the "tendency of medical providers to talk with loved ones rather than respecting the patient and keeping the patient at the center of the conversation." However, there were also stories that relayed the impact of positive communication.
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From page 448... ...
Among those living with serious illness, comments on this topic conveyed the importance of having advance directives, and it was suggested that digital advance directives be made standard practice to help ensure that they will be known and honored. PROVISION OF CARE: DELIVERY, QUALITY, COORDINATION, AND TIMING Individuals living with serious illness, caregivers, providers, and others wrote many compelling stories about how care was received and provided.
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We will bring tests results with us, so that one physician is aware of what others are doing." Another major concern expressed by respondents related to the adequacy of pain relief in individuals with serious illness. A provider believed that there was too much fear of addiction to pain medication, which prevents adequate pain control in patients.
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Other suggestions from caregivers and those living with serious illness related to social supports and assistance in coping, such as the need for skilled advocates, social workers, better grief support, respite care, home visits, and pain control. Some stories relayed the extent of depression in loved ones who were dying and some who died by suicide.
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We need SERIOUS change to funding." Another caregiver remarked that "the emotional cost is great, the financial cost is astronomical." Providers expressed frustration that the fee-for service model poses a problem for providing care for the ill and those near the end of life, that Medicare regulations drive care, and that there are financial incentives to treat patients aggressively. One provider commented, "I wish doctors were given more support to be there." A nurse wrote, after reflecting on the death of a loved one, "We must look at restructure of reimbursement, so provid
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One palliative care nurse wrote about the need for "financial incentives that focus on quality of life, symptom management and caregiver burdens." Caregivers noted that they experienced challenges when dealing with insurance companies. One respondent stated, "The challenges come with insurance companies and what they think is necessary or not necessary.
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. I am astounded that it would be expected of any caregiver, especially an elderly spouse." Describing the burden seen on families caring for loved ones, one provider wrote, "The idea that families are often forced to make great personal and financial sacrifices to do what is best for their loved one is inexcusable for a country such as ours." While many caregivers and loved ones remarked that they received support during their grief and bereavement from health care providers, hospice companies, loved ones, and faith communities, others noted that these services and supports were inadequate or nonexistent.
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454 DYING IN AMERICA for the most part, when you take the time to find out what's most important to patients and families, they make very reasonable choices. The challenge is that our health care system does not encourage these conversations, our professional providers frequently do not have the time or training, and treatment measures default to those that are not patient-centered."
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