DIGNITY FOR PATIENTS WITH ADVANCED ILLNESS Date: Sun, 09 Feb 1997 21:04:25 +0000 (GMT) From: Richard Gamlin Subject: Dignity Summary Sender: rdgamlin@zetnet.co.uk To: drstall@ubvms.cc.buffalo.edu May I begin by thanking you all again for replying to my message stating that I was interested in carrying out a qualitative research study about the meaning of dignity for patients with advanced illness. I received over forty replies from patients, relatives and professionals. I think I have replied to all in person but please tell me off if I forgot anyone. It certainly created some interest which I will attempt to summarise below. I will not mention any names to maintain confidentiality. The majority of replies described and discussed incidents whereby a patient's dignity was compromised. A small minority discussed very positive experiences whereby dignity was maintained. 1. Dignity is defined and described in many different ways confirming that it difficult to reduce to a simple meaning. Above all it is INDIVIDUAL. 2. Dignity is DYNAMIC. People described how, before they or the person they were talking about became ill, they had a mental picture of what dignity meant. Sometimes that would change. For example one gentleman who was caring for a relative described how he felt that a clean mouth was very important. When the patient became ill he did not wish for mouth care finding it painful and distressing. Interventions, by staff, to clean his mouth were described as undignified. 3. CHOICE emerged as a key theme. Patients and their families wanted the patient to "do it their way". This meant that the patient should have control over his/her circumstances. This might mean what he eats or drinks, what time of day he gets up etc. 4. RESPECT came through loud and clear. A gentleman described how the consultant would throw back the bedclothes of his daughter (in an ICU), without a good morning or an introduction. He described how he managed to change the consultant's practice very effectively. 5. CONTROL is inextricably linked with the above issues. Relatives of patients described how the patient gradually or sometimes rapidly loses the ability to exercise control over even the simplest of things. Relatives found it distressing and undignified to see the patient treated as a child. 6. POOR PAIN AND SYMPTOM CONTROL was mentioned a few times. It seems that it is particularly traumatic for family members to witness. This might be in the form of too little opioid or "being too doped up to talk". 7. INAPPROPRIATE CONTINUATION OF TREATMENT. Relatives expressed strong emotions about what they saw as "inappropriate treatment". They described "x-rays in the last 24 hours of life", "constantly being hooked up to drips and feeding tubes, and "having to wear a diaper". It is interesting how little was said about exposing the patient during procedures, an issue that may come to mind as a professional. Some who replied said that before they watched a love one die without dignity they would never have considered euthanasia. Alarmingly some had changed their minds because of having to watch someone they love die without dignity. A helpful and challenging comment made by many was that "it need not have been that way". The key to preserving dignity, they suggest, is a close meaningful respectful relationship based upon effective communication. This issue of communication rears it's head again and as Tom Hennigan has raised elsewhere we do not seem to have made much progress over the years! One relative summed it up by simply stating "treat the patient as a person, not a disease, or an interesting wound care problem". Another said" The patient is the boss all the way". I hope you find this summary interesting and perhaps you will enter or re-enter the debate. Because of all the interest shown I now feel encouraged to continue with research. Thank you again. With Very Best Wishes, Richard Gamlin rdgamlin@zetnet.co.uk Marie Curie Centre Marie Curie Drive Newcastle On Tyne NE4 6SS 0191 2737931 (tel) 0191 2723067 (fax) pager 01426 256100 mobile0468 927684