Cultural Aspects of Dignity Conserving Care

Cultural Aspects of Dignity Conserving Care:
An Invitation to Discuss a Research Collaboration

Cultural Aspects of Dignity Survey

The influence or role of culture, ethnicity and religion often arises within discussions pertaining to individual perceptions of dignity and dignity related concerns. The Manitoba Palliative Care Research Group has examined some facets of dignity, but has not adequately examined how these variables influence or shape one’s sense of dignity. This work can’t be carried out in a single geographic setting and requires broad input from members of health care teams in different countries, and from different cultural and ethnic groups. Therefore, we have asked IAHPC to partner with us in the dissemination and promotion of this research project. We are therefore inviting those readers interested in participating in this research, to please complete the survey below.

As a starting point, we wish to identify an international group of investigators in various different and distinct settings. It will be necessary to identify and designate palliative care researchers willing to take a lead role in their region or country (or facilitate such an individual being identified). Once selected, the group will decide issues related to the design, and feasibility of the project.

If you are interested in becoming a designated leader for your country or region in this project, please complete the survey below.

Thank you very much,
Manitoba Palliative Care Research Unit
Canada

Your Name:

*First: * Last:

e-mail address:

Mailing Address:

City:

State/Prov:

Country:

Postal Code:

Country where you work:

Language(s) used in your practice:

Major ethnic groups served by your practice:

Location of your facility: Rural Urban

Respondents Gender: Female Male

Number of years of work in health care/medicine:

Choose Profession:

Other (please specify):

Physician: ( If a physician, primary area of specialization)

Other (please specify):

Current primary type of work: (select your main activity)

Other (please specify):

Current primary place of practice:

Other (please specify):

Does the concept ‘dying with dignity’ have meaning in your country? Yes No

If ‘yes’, please provide us your sense of what that means. Include cultural, ethnic or religious considerations, which might have a bearing on this issue where you live, and amongst the people you work with.

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Is there an expression in your language that means or approximates the meaning of the word ‘dignity’? Yes No

If ‘yes’, please provide us that expression (phonetically [how it is pronounced], and as spelled in your language)

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How does the meaning differ, if at all, from the meaning of the concept of dignity?
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If there is no translation for the concept of “dignity” in your language, what term or concept do you think most closely speaks to the issue of “dying with dignity” where you live?
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Provide that term/phrase (phonetically, and as spelled in your language); how does it differ from the English word/notion of “dignity”?
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Please indicate (yes or no) which of these issues, within the context of your setting, your patients would relate to the issue of dying with dignity.

Illness-related Concerns
Symptom Distress
	Diagnostic Questions	Yes		No
Physical Distress	“How comfortable are you? Is there anything we can do to make you feel more comfortable?”
Psychological Distress	“How are you coping with what is happening to you?”
*Medical Uncertainty	“Is there anything further about your illness that you would like to know? Are you getting all the information you feel you need?”
*Death Anxiety	“Are there things about the later stages of your illness that you would like to discuss?”
Level of Independence	“Has your illness made you more dependent on others?”
Cognitive Acuity	“Are you having any difficulty with your thinking?”
Functional Capacity	“How much are you able to do for yourself?”
Dignity-Conserving Repertoire
Dignity-Conserving Perspectives
	Diagnostic Questions	Yes		No
Continuity of Self	“Are there any things about you that this disease does not affect?”
Maintenance of Pride	“What about yourself or your life are you most proud of?”
Role Preservation	“What things did you do before you were sick that were most important to you?”
Hopefulness	“What is still possible; are there still things that offer meaning or hope?”
Generativity/Legacy	“Do you feel something of who you are will live beyond your dying?”
Autonomy/Control	“How in control do you feel”?
Acceptance	“How at peace are you with what is happening to you?”
Resilience or Fighting Spirit	“Do you feel life you still have the ability to fight on living?”
Dignity-Conserving Practices
Living in the moment	“Are there things that take your mind away from illness, and offer you comfort?”
Maintaining normalcy	“Are there things you still enjoy doing on a regular basis?”
Finding spiritual comfort	“Is there a spiritual or religious community that you are connected with, or would like to be connected with?”
Social Dignity Inventory
	Diagnostic Questions	Yes	No
Privacy Boundaries	“Is having privacy and personal space still important to you?”
Social Support	“Do you feel you have a supportive community, providing you comfort and care?”
Care Tenor	“Do you feel you are being treated with respect, honor and esteem?”
Burden to others	“Do you worry about being a burden to others?”
Aftermath concerns	“Do you have major concerns for the people you will be leaving behind?”

What else, with respect to the issue of ‘dying with dignity’, do you think ought to be considered or included?
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Thanks for taking the time to provide us your thoughts on this issue. Once we see the responses, and have a sense of who wants to take part in further discussions about designing a more comprehensive research protocol, we will contact you again.

Please click Here to Submit the Survey

Submit Here Clear Form

Hospicecare.com

Cultural Aspects of Dignity Survey

Symptom Distress

Dignity-Conserving Perspectives