Ethical Issues of Ethical Issues of Hospice and the Hospice and the

Loss of TechnologyLoss 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?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 Hospice.. As Told by Lisa Heartland requires that you go through 6

hours of trainingSit with patients for 3 hours a week, most

have dementiaSome are actively dyingAlso go to a home for 3 hours a week and sit

with someone in home careMain 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 Sheila

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 Ethical Issues and CommunicationCommunication

Ethical Issues within the Ethical Issues within the Hospice SystemHospice 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 A Respect for Patient AutonomyAutonomy

Many patients are unresponsive, on life-support

Artificial hydration and nutrition◦ YES or NO?

What would the patient want?Physician-assisted suicideDecision-making is very hard

◦ Lot of uncertainty surrounding it

Barriers and Access to Hospice Care

Communication and Language Barriers

Underutilization by minorities◦ 84% Caucasians◦ 8% African Americans◦ 8% others

Mistrust within the health care system

Lack of knowledgeLack of minority employees

Demographical Features and Demographical Features and Barriers to AccessBarriers 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

In 2004:◦ 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 Hospice and How Communication is Lost Communication is Lost Through TechnologyThrough Technology

COMPUTERS!COMPUTERS!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 Computers… Good or Bad?Bad?

Hot or Not?Hot or Not?Positives

◦ 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

handwritingNegatives

◦ 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 FutureImplications for the FutureMore community involvement

◦Hospice promotion: especially targeting minority populations

◦Education of the wide array of services offered by hospice

◦Address misconceptions and issues of mistrust

Thank You for Your Time Thank You for Your Time