Please print out sections or this whole page through your web browser so that you can discuss any part of this article with your doctor. If the doctor has actual medical study quotes it will make it more likely for them to accommodate your wishes.
Kayla and I have seen more death since her diagnosis than in our whole lives. These have taken many different forms and all were filled with pain and sorrow. After a particularly hard funeral for a little boy I decided to start research on this subject because I thought it may be helpful for people who are facing death whether it is for themselves or a loved one. There are many facets and means of improving the death process and quality of life the whole time that life exists. This is what this article is about. All age groups are covered.
Humor and Death
When a person is in the last stage of life, it is my belief that they become hypersensitive to the people around them. There are many mixed emotions when it comes to this subject. Facing the loss of loved ones is very stressful for all involved. One answer is the use of humor to scoff at the seriousness of the situation. Per The American Cancer Society: Humor therapy is the use of humor for the relief of physical or emotional pain and stress. It is used as a complementary method to promote health and cope with illness.
Spontaneous or unplanned humor involves finding humor in everyday situations. Being able to find humor in life can be helpful when dealing with cancer.
Native Alaskan people acknowledge laughter as good medicine in relieving stress and increasing learning. [1]
RESULTS: Humor and laughter were widespread and important in the research setting. An overall attitude of good humor prevailed. Within that atmosphere, humor served myriad functions. Functions were identified in three overarching themes; building relationships, contending with circumstances, and expressing sensibility. Humor among patients, families, and staff most commonly served to build therapeutic relationships, relieve tension, and protect dignity and a sense of worth. Humor was particularly significant in maintaining collegial relationships, managing stressful situations, and maintaining a sense of perspective. SIGNIFICANCE OF RESULTS: Findings established the significance of humor and laughter as humanizing dimensions of care of the dying and contributes to the volume of research supporting evidence-based practice. [2]
The impact of humor on patients with cancer.
A review of literature found a positive correlation between humor and comfort levels of patients with cancer. Humor was frequently used for relaxation and as a coping mechanism that aided in promoting general wellness. Various types of humorous material lessened anxiety and discomfort, which allowed for patient’s concerns and fears to be discussed openly. Literature also showed that humor had a positive effect on the immune system. Improvements in pain thresholds and elevations in natural killer cell consistently appeared in quantitative experimental studies. In addition, measurements of specific neuroendocrine and stress hormone levels revealed biochemical changes that suggested improved physical stress responses and increased feelings of well-being after humorous interventions. [3] This does not just apply to cancer patients but to any patients going through the end of life process or illness in general.
This may sound inappropriate, but in fact is not and one should use humor as much as possible in any arena with someone who is ill.
Dignity
A study was done interviewing elderly living in nursing homes. The main categories of the dignity model were broadly supported: illness-related concerns, social aspects of the illness experience and dignity conserving repertoire. This study states that the interviewed patients were not distressed by the thought of impending death, rather they were distressed by multiple losses they had experienced. [3]
What is dignity? To me it is allowing the person to make decisions about their daily life and care, however small. Giving the person choices, treating them as an equal. Not enforcing something upon them that they do not want. Helping them to maintain some semblance of normalcy such as getting dressed every day.
Sometimes it is easy to forget when one takes over the care of a patient that they should be consulted even if young or very old. Kayla was seven- years-old when she was diagnosed. When I realized that I should consult her and and started doing so this made her much more interested in her day-to-day care. She started to participate and ask questions. This made me realize that I had done her an injustice by taking everything over never considering that a seven year old could make decisions for themselves. Ever since then we have become a team and she participates fully. I even coached her that she is the customer with all the rights of an adult in questioning or wanting something a certain way. The most important point is that this gave her a way to make choices for herself in a world where many choices had been taken away. Her dignity was given back to her.
Five Wishes
The Five Wishes® materials were developed to help people express their final wishes in five important areas.
1. Who Will Be My Health Care Agent
2. Medical Treatment I Do or Do Not Want
3. Expectations for Comfort Care
4. How I Want People to Treat Me
What I Want My Loved Ones to Know http://www.agingwithdignity.org/five-wishes.php
End Of Life Discusions with Adolescents and Young Adults
Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate language. [4]
A study was done to explore wether adolescents or young adults living with a terminal illness find it acceptable and helpful to have a planning document to share their wishes and thoughts regarding End of Life (EOL) care. If so, to learn about specific concerns adolescents and young adults feel are important to include in such a document.
Each participant was asked to critically evaluate each wish in terms of whether the concepts within were considered (1) appropriate to ask individuals the participant’s age; (2) helpful for other people the participant’s age to think about; (3) helpful to the participant to think about; (4) stressful to contemplate. Participants were also asked to suggest modifications and additions to the document. RESULTS: Twenty patients completed the survey. Ninety-five percent of the participants reported that an advance directive like Five Wishes would be “helpful” or “very helpful” to themselves, 90% stated that the document would be helpful to others, and no patients found talking about the issues in Five Wishes “stressful” or “very stressful.” Participants were more interested in items concerning how they wanted to be treated and remembered than items concerning medical decision-making. CONCLUSIONS: An advance care planning document may be appropriate and helpful for adolescents and young adults living with a serious illness. [4]
Even teenagers without chronic illness have thoughts about end-of-life issues and have opinions remarkably similar to those of chronically ill teens. Those who are chronically ill are less likely to wish to discuss EOL issues early in their illness. [5]
Seven legal barriers to end-of-life care: myths, realities, and grains of truth. Meisel A, Snyder L, Quill T; American College of Physicians–American Society of Internal Medicine End-of-Life Care Consensus Panel.
Center for Ethics and Professionalism, American College of Physicians-American Society of Internal Medicine, 190 N Independence Mall W, Philadelphia, PA 19106, USA.
“CONCLUSIONS: Legal myths about end-of-life care can undermine good care and ethical medical practice. In addition, at times ethics, clinical judgment, and the law conflict. Patients (or families) and physicians can find themselves considering clinical actions that are ethically appropriate, but raise legal concerns. The 7 major legal myths regarding end-of-life care are: (1) forgoing life-sustaining treatment for patients without decision-making capacity requires evidence that this was the patient’s actual wish; (2) withholding or withdrawing of artificial fluids and nutrition from terminally ill or permanently unconscious patients is illegal; (3) risk management personnel must be consulted before life-sustaining medical treatment may be terminated; (4) advance directives must comply with specific forms, are not transferable between states, and govern all future treatment decisions; oral advance directives are unenforceable; (5) if a physician prescribes or administers high doses of medication to relieve pain or other discomfort in a terminally ill patient, resulting in death, he/she will be criminally prosecuted; (6) when a terminally ill patient’s suffering is overwhelming despite palliative care, and he/she requests a hastened death, there are no legally permissible options to ease suffering; and (7) the 1997 Supreme Court decisions outlawed physician-assisted suicide. Many legal barriers to end-of-life care are more mythical than real, but sometimes there is a grain of truth. Physicians must know the law of the state in which they practice.” JAMA. 2000;284:2495-2501.
This was taken exactly as written because this is so important for all of us. I ran into these things when I was taking care of a dying family member and thankfully she had all of her advance directives written long before she died. These were kept in the glove box of my car should they be needed in a moments notice. Having these made decision making very easy for me. It removed any doubt or reservations because I knew what she wanted. What more could one ask for? The lesson I learned was that all of us should face the need for these types of legal documents before we need them. This link provides all the information you need on this subject with prices for their basic booklets being a low cost of $5.00 http://www.agingwithdignity.org/five-wishes.php
Here is another website that provides templates for living wills and advance directives for a low cost of $3.00 http://livingwillproviders.blogspot.com/
High Dose Vitamin C for Terminal Patients
To investigate the effects of vitamin C on cancer patients’ health-related quality of life. Thirty nine terminally ill cancer patients were studied for quality of life with the use of oral and intravenous high dose vitamin C.
All patients were given an intravenous administration of 10 g vitamin C twice with a 3-day interval and an oral intake of 4 g vitamin C daily for a week. And then we investigated demographic data and assessed changes in patients’ quality of life after administration of vitamin C. In functional scale, the patients reported significantly higher scores for physical, role, emotional, and cognitive function after administration of vitamin C. In symptom scale, the patients reported significantly lower scores for fatigue, nausea/vomiting, pain, and appetite loss after administration of vitamin C. In terminal cancer patients, the quality of life is as important as cure. Although there is still controversy regarding anticancer effects of vitamin C, the use of vitamin C is considered a safe and effective therapy to improve the quality of life of terminal cancer patients.[6]
Death in Pediatrics
All children between the ages 1 and 19 years dying on the general paediatric wards of the John Hunter Children’s Hospital between 1991 and 1998 were included in the study. The main outcome measures were the duration of ‘terminal care only’ treatment; time spent in hospital in the previous year; analgesia used, dose and route of administration; adjuvant medications; quality of life in the final 24 h. RESULTS: Eighteen children (aged between 1 and 19 years) died on the general paediatric wards at JHCH between 1991 and 1998. The most common diagnosis was malignancy (five patients), with cystic fibrosis, cerebral palsy and a degenerative neurological disorder each accounting for four patients, and one child had herpes simplex encephalitis. In all children the terminal nature of their condition was recognized and in all but three patients there was documentation of ‘not for resuscitation’ (NFR) orders following discussion with the child’s parents. The mainstay of analgesia was an intravenous narcotic infusion with 11 (61%) children needing a morphine infusion. Fifteen patients (83%) required other medications including antiemetics (An antiemetic is a drug that is effective against vomiting and nausea.), anticonvulsants (stops convulsions) and corticosteroids. Twelve (66%) children were semiconscious or unconscious on the day of death. Three children were uncomfortable and distressed, one alert and symptom free and in two cases the level of consciousness was not recorded. Three children continued to have seizures until their death. CONCLUSION: The majority of terminally ill children were managed well with intravenous narcotics and adjuvant medications. There may be scope for such children to be managed successfully at home with appropriate support for the general practitioner by paediatric and palliative (remedy that alleviates pain without curing) care specialists. Some cases in which palliation is difficult do remain in hospital and additional measures need to be employed to ensure a symptom free death for these children. [7]
Therapeutic touch and the terminally ill: healing power through the hands.
I hope it has become apparent that the use of Therapeutic Touch can be a useful addition to more conventional hospice treatments. Also, it can be a very rewarding and fulfilling experience for the patient. It has been so for me. I feel extremely fortunate to have been given the opportunity of introducing Therapeutic Touch into the Allegheny Hospice, a program of Allegheny General Hospital in Pittsburgh, Pennsylvania. We are still in the early stages of implementation. Currently, we are initiating a research program to accomplish the following with respect to Therapeutic Touch: Demonstrate that Therapeutic Touch does, in fact, yield the same results when performed in a hospice setting as when performed in other settings established by prior research. Establish the degree to which drug levels can be reduced (if any) by the introduction of Therapeutic Touch into the treatment regimen and still maintain an acceptable level of pain control. Demonstrate that the quality of life can be improved for the patients and their families through the use of Therapeutic Touch over the current treatment methods not using Therapeutic Touch. Establish sufficient documentation for respective insurance providers to justify future payment for this treatment. It is envisioned that this program will be accomplished later this year. Our hospice organization is a very dynamic one, dedicated to bringing the best possible care to our patients. In addition to the aforementioned Therapeutic Touch research program, we have just embarked on another research effort to determine the advantages of using a “Low Pressure Air Mattress” to reduce the incidence and severity of skin breakdown. This has the potential to improve the quality of life not only of the patient but also of the care giver. In this day and age when many seem to have severely neglected the sick and elderly, there is a great opportunity for creative, compassionate people to become involved in hospice programs around the country. In so doing, you could render an invaluable service to your fellow, man, and, at the same time, achieve a deep sense of fulfillment. Anyone wishing to become involved in a hospice program or interested in learning Therapeutic Touch may contact me at Allegheny Hospice, a Allegheny Center, 6th floor, Pittsburgh, Pa., 15212.
‘Scripts’ for dying at home
Perceptions and expectations reflecting what constitutes a ‘good’ death that seem to exist in Western societies are explored and compared with those presented by five symptom control team nurses at their home visits to 54 terminally ill cancer patients. These perceptions and expectations are termed ‘scripts’ for dying and are derived from the nurses’, patients’ and relatives’ audio-recorded conversations over a 3-month period. The elements of the ‘scripts’ used were identified as:
control of physical symptoms,
acceptance of cancer and its prognosis,
preservation of hope and ‘will to live’,
mobility and ‘fighting back’,
enjoyment of life,
a peaceful death at home. [9]
HOPE
Although deemed vital to patient well-being, hope in persons who are terminally ill is often thought to be problematic, particularly when centered on cure. As part of a study on end-of-life decision-making, we asked 28 patients with cancer, believed to be within weeks of their death, to talk about hope. Responses were transcribed and discursively analyzed, with 3 versions of hope, each of which connected hope and life, identified–hope as essential to, and for, life; hope, life, death, and others; and, hope/s changing during (or in) life. Hope for cure was common. Rather than death-denying, patients’ hope appeared life-affirming, functioning to value patients, their lives, and connections with others. [10]
Conclusion
There are many steps that one can take to ease the passing of a loved one. Here are the steps bulleted for you.
* Work closely with your doctor to implement actions that control physical symptoms and help to keep the patient comfortable at all times.
* Every effort should be made to find out the patients Five Wishes. http://www.agingwithdignity.org/five-wishes.php
Here is another website that provides templates for living wills and advance directives for a low cost of $3.00 http://livingwillproviders.blogspot.com/
These actions are helpful to all concerned. My view would be to have them and if I do not need them right away I will eventually need them at some point in my life. Don’t forget that these actions apply to young people also.
* Try to have and include humor in everyday life by all family members and friends.
* Ask your doctor about high dose vitamin C infusions for improving quality of life.
* Every effort should be made to avoid bed sores/pressure sores as these are very difficult to get rid of once they start. See Bed Sores page on this website under the Hospitals/Doctors section.
* Try and maintain some sort of normalcy if at all possible.
* Dignity is very important for any patient of almost any age. Please make sure that the patient is consulted on their care and heath. Do not disregard their wishes. Their views and desires are of the highest priority.
* Incorporate Therapeutic touch as a part of daily life. A friend of mine who was dying loved her foot massages that I gave to her as much as possible.
* With younger patients make sure you let them know how they will be remembered as stated in the study above. I found this surprising when I read this study but it makes sense that a child would have a better grasp of this subject than adults.
* Experience joy, love, hope in whatever manner possible, treasure these moments and create them every chance available to you.
* Create in some way: paint, color, write letters, what ever makes sense to you but try to create something. This is very helpful to patients in general.
In these situations we are tested in many ways. Just do the best that you can do. If you make a mistake, so what, move on. Try to find what works for you. I hope you have found this article helpful to you or your loved one during a trying time. My thoughts and empathy are with you.
Deb
~
References
1. J Cancer Educ. 2006 Summer;21(2):104-7. Healing hearts: laughter and learning. Cueva M, Kuhnley R, Lanier A, Dignan M. Alaska Native Tribal Health Consortium, Anchor-age, AK 99508, USA. mcueva@anmc.org PMID: 17020524 [PubMed – indexed for MEDLINE]
2. Palliat Support Care. 2004 Jun;2(2):139-48. Humor and laughter in palliative care: an ethnographic investigation.Dean RA, Gregory DM.Faculty of Nursing, University of Manitoba, Winnipeg, Manitoba, Canada. Ruth_Dean@UManitoba.ca
3. Clin J Oncol Nurs. 2005 Apr;9(2):211-8. The impact of humor on patients with cancer. Christie W, Moore C.
4. How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. Wiener L, Ballard E, Brennan T, Battles H, Martinez P, Pao M. Pediatric Oncology Branch, National Cancer Institute/National Institutes of Health, Bethesda, Maryland 20892, USA.
J Adolesc Health. 2004 Dec;35(6):529.e1-6. What do adolescents want? An exploratory study regarding end-of-life decision-making. Lyon ME, McCabe MA, Patel KM, D’Angelo LJ. Division of Adolescent and Young Adult Medicine, Children’s National Medical Center, Washington, DC 20010, A.
Changes of terminal cancer patients’ health-related quality of life after high dose vitamin C administration. , Yeom CH, Jung GC, Song KJ. Department of Family Medicine, Myongji Hospital, Kwandong University College of Medicine, Goyang, Korea.
A 7-year review of deaths on the general paediatric wards at John Hunter Children’s Hospital, 1991-97. Mallinson J, Jones PD. John Hunter Children’s Hospital, New Lambton Heights, Discipline of Paediatrics, The University of Newcastle, New South Wales, Australia.
Therapeutic touch and the terminally ill: healing power through the hands. Snyder JR.
‘Scripts’ for dying at home–displayed in nurses’, patients’ and relatives’ talk. Hunt M. South East Thames Regional Health Authority, London, England.
Hope, life, and death: a qualitative analysis of dying cancer patients’ talk about hope. Eliott JA, Olver IN. Cancer Council Australia, Sydney and School of Psychology, University of Adelaide, Adelaide SA 5005, Australia.