Ethical Issues of Hospice and the Loss of Technology
Hospice remains committed to providing care that treats the person, not the disease, and emphasizes quality of life, not duration.
What is Hospice?
Follows palliative care philosophy
Goal is in reducing severity of disease symptoms rather than providing a cure
Offers comfort and dignity to patient dealing with illness
Treats the patient holistically: physically, spiritually, and emotionally.
Reaches out to families and caregivers to provide support
Hospice.. As Told by Lisa
Heartland requires that you go through 6 hours of training
Sit with patients for 3 hours a week, most have dementia
Some are actively dying
Also go to a home for 3 hours a week and sit with someone in home care
Main job= LISTEN LISTEN LISTEN!!
Has helped me personally cope with issues with death as well as being comfortable talking about one’s own death
Sheila, 55 year old female
Lupus, Hospice patient
Famous quotes by Sheila:
“ Hospice is somewhere I never thought I’d be. Sometimes I sit and wonder why this is happening to me, why I’m only 55 and I feel like I should be at home enjoying my life.”
“ I just want to go home. The food is terrible here.”
“ Being in hospice is difficult. You have to come to terms with your own death. You have to face things that you never thought you would have to face so soon. No one comes to visit me, I’m dying alone.”
Sheila is the youngest person that I have ever volunteered with
Ethical Issues and Communication
Ethical Issues within the Hospice System
As with all end of life care, many ethical issues surround hospice and palliative care
Ethical issues involve three major areas:
A respect for patient autonomy
Ex. artificial nutrition and hydration
Withdrawing and withholding treatment
Access to care and overcoming barriers
A Respect for Patient Autonomy
Many patients are unresponsive, on life-support
Artificial hydration and nutrition
YES or NO?
What would the patient want?
Decision-making is very hard
Lot of uncertainty surrounding it
Barriers and Access to Hospice Care
Communication and Language Barriers
Underutilization by minorities
8% African Americans
Mistrust within the health care system
Lack of knowledge
Lack of minority employees
Demographical Features and Barriers to Access
Hospice serves more Caucasian females then any other race or sex
African Americans and Hispanics have been shown to receive less care through Hospice
Middle to lower class seek care through hospice
“ Identifying and overcoming these barriers is important in improving access to end of life care now and will become even more critical in coming years,” (Hastings Center Report 1).
“ Misperceptions caused by lack of cultural sensitivity and skills can lead to unwanted or inappropriate clinical outcomes and poor interaction with patients and their families at critical junctures as life comes to a close”.
Research has shown that African Americans and Hispanics receive less pain medication then Caucasians
Lack of Information about Hospice Services
African Americans represented fewer than 10% of the nearly 1 million Americans who utilized hospice care (NHPCO, 2004).
Another study evaluated more than 1500 deaths in which 111 decedents were African American and asked families of non-hospice users if hospice had been offered as an option. These investigators found that 68% of the African Americans had not used hospice services, and of these, more than half had not been informed about the availability of hospice (Abdul-Malik et. al., 2004).
Hospice and How Communication is Lost Through Technology
No human intervention
Everything is done through/on the computer
No one talks to each other
Instead of having conversations with the staff people watch TV
Loss of communication due to technology is very apparent
Computers… Good or Bad?
Hot or Not?
Everything kept in a file on the computer and this is organized
Easier then writing it down
Easier to read then some of the doctor’s handwriting
It’s a strong subculture
Ethical issue because people leave files up and that’s a confidentiality issue
Loss of transfer by human hand/word of mouth
Implications for the Future
More community involvement
Hospice promotion: especially targeting minority populations
Education of the wide array of services offered by hospice