User:Iimph2017/sandbox

Article evaluation:

The article I explored was Nutrigenomics. It generally well represented both sides of the debate in the Ethics sections of their pages. However, in shorter subsections, one side was usually overrepresented and biased. For example, in the Privacy section of the Ethics section of the Nutrigenomics article, only concerns of privacy were discussed, no potential solutions or counterarguments were discussed. Some portions were seemingly not as relevant, as they delved more into the technical details of an adjacent topic. For example, the end of the Background and preventative health section begins to go into an explanation of SNPs instead of further discussing the genetic signs of metabolic disorders. Overall, all of the citation links I tested worked, many of them to an external research paper. The links that weren't to research papers were to examples of private DNA testing companies, and weren't used to support a claim, as using a private corporation's website would be a biased source. There are a few examples of missing citations, such as in the "Distribution of tests" section, where an overview on direct to consumer genetic tests contains no citations. However, besides this oversight, the article is well cited. Due to the newly emerging nature of the subject, none of the information seems to be too old or out of date, as the oldest source cited is from 2002. The main conversation occurring in the talk page of the article is whether or not nutrigenomics is a legitimate field of scientific research. Different papers have been cited in this argument over the course of several months. The article was rated as C-Class on the quality scale and Low-importance on the importance scale. It is a part of the Genetics WikiProject. This article takes a more broad perspective than we probably would in class, as it covers the hard science as well as the myriad ethical concerns. Additionally, it covers a section of very new genomics research that is still quite controversial.

Content Gap:

I believe a content gap is a gap between the information relevant to a specific topic and the information present in the wikipedia article. A way to identify this would be looking for some major components that are relevant to most articles: background knowledge, controversy, and historical timeline/general historical information. Another way to identify this is if many parts of the article go off on tangents, avoiding the information actually relevant to the topic. Additionally, if only one side of a controversy is covered. 

One reason a content gap may arise is if someone biased is writing the article. If only one side being represented would be advantageous to one’s personal views, they may often exclude information that provides evidence to the opposite side. A remedy would be to research the opposition. Another reason would be that there are not enough people researching the topic. A remedy for this would be simply to introduce the topic to more people and have volunteers do research for the page. 

It does matter who writes on Wikipedia. The best editors would be people willing to dedicate themselves to research and are unbiased. However, if editors on both sides are adding information, in theory both sides would be represented. Being “unbiased” on Wikipedia is being able to present objective facts on an article without potentially skewing the reader’s opinion one way or another based on either faulty evidence, inserted opinions, or lack of information on one side. That is similar to my own definition of bias. 

Death midwife: This article is a stub, so I plan to add information to the existing subsections, which each only include one sentence. They are "certification" and "name controversy." Additionally, I plan to add more content related to the death midwife's relation to hospice care and end of life care. As of now, the article hasn't been even vaguely researched, and the topic of a death midwife is treated more as the contrast to a doula or actual midwife in comparison to a stand-alone counselor.

Patient advocacy: This article is rated as a starter-article and not a stub, so a little more research has been put into it. I would like to focus on the History subsection of the article, adding in examples of specific cases where patient advocacy has succeeded or failed. Additionally, I'd like to add more information into the United States subsection of the government agencies subsection, and find more research on how the US government is practicing patient advocacy or is acting as a conduit for patient advocacy. Also, there are many sections missing citations, and I would like to find sources to amend that.

Additions to make to the Death Midwife Article:

• Add to lead to outline general topics of the article
• Delete for plagiarism and rephrase the long quotations in the lead portion of the article
• add more references to uncited portions
• add a section in parallels to traditional doulas and midwives
• elaborate on certification programs, and compare to informal "death doulas"
• add section on association to the alternative death care movement

Draft Article:

A death midwife, or death doula, is a person who assists in the dying process, much like a midwife or doula does with the birthing process. It is often a community based role, aiming to help mourners cope with death through recognizing it as a natural and important part of life. The role is also related to hospice or end of life care, similarly to how midwifery is to obstetrics. Practitioners perform a large variety of service, including but not limited to creating death plans, providing spiritual, psychological, and social support, and in rare instances, physical assistance. Their role can also include more logistical activities, helping with services, planning funerals and memorial services, and guiding mourners in their rights and responsibilities.

The presence of the role of a modern death doula has been evolving in recent years, including a controversy over the regulation process for the position and the use of the term "midwife" as opposed to doula, and bills proposed to regulate the process and provide licenses for death doulas. The field has also seen a significant rise in interest, especially in the organization INELDA, which trains hospitals and hospitals along with individuals.

Historical role of death midwives

Women in burials

Women have long had a hand in handling the affairs of the deceased, especially in tasks in parallel with the natural burial movement. Historically, women have most often cared for the dead, doing the bulk of the prep work for the burial. It was seen as part of the woman's role in a family to care for the deceased, just as she cared for the children and the sick. However, it was the rise of the practice of embalming and the funeral industry that pushed women out of the practice around the time of the Civil War.

This traditional role of women in burials has given rise to the modern female-led "death doula" movement. Many aim to reconnect people with historical death practices, working with families to embrace the process of dying instead of treating it as a clinical practice through providing alternatives to the industry standard of cremation or embalming.

History of palliative care doulas in clinical medicine

The rise of death doulas in palliative care is a relatively new movement, with private certification programs following the legacy of pilot programs in clinical care. One of the first movements was start out of New York in 2000, a volunteer program focused on pairing so-called "doulas" with terminally ill people. The program was funded by the Shira Ruskay Center of the Jewish Board of Family and Children's Services and NYU Medical Center, and began pairing five volunteers with patients. The program was ultimately named "Doula to Accompany and Comfort." The volunteers went through training on both clinical and spiritual aspects, including but not limited to the complexities of end of life health care, physical issues like incontinence and disorientation, and hope in the face of death.

The next major clinical implementation of the death doula methodology was at the Baylor Supportive and Palliative Care Service and Clinical Ethics Committee shortly after the establishment of the New York program. Members of this department including palliative care nurses, chaplains, and therapists worked together to create a program with in consultation with the New York program. From there, a program involving a 6-week training program was formed to work hand in hand with clinical medicine, wherein doulas are referred by nurses, social workers, and therapists, and must be specifically ordered by the doctor. After being ordered, volunteer trained doulas are matched by the hospital's revered to individual cases. While the Doula to Accompany and Comfort program provided outpatient services as well as inpatient, the Baylor program is only for inpatients.

Certification

There are many private organizations that offer a certification program, including the non-profit A Sacred Passing, the funeral home Sacred Crossings, Beyond Hospice, Earth Traditions, non-profit INELDA, the International End of Life Doula Association, and Quality of Life Care. Smaller certification organizations are associated with individual funeral homes, and are available to the family in addition to more traditional end of life services. Certification is not available in traditional educational environments, it usually offered in shorter, paid training sessions. The Doula Program is a volunteering organization that focuses on the relationship between the doula and the dying. Instead of certification, volunteers submit an application in a pool of around 300, and around 12 are admitted each cycle.

Public certification programs associated with hospitals and more closely tied with clinical care are restricted to a few pilot programs. These often involve training spanning multiple weeks similarly to the private programs, however, they are often more related to palliative care and putting the terminally ill patient in a more comfortable situation through clinical means and mental health counseling rather than focusing so much on the spiritual and emotional support aspect. These programs include Baylor University Medical Center's Support and Palliative Care Service's Doula to Accompany and Comfort Program, as well as New York University Medical Center's Department of Social Services nonsectarian volunteer doula program.

Legal controversy

College of Midwives of British Columbia

There has been recent controversy over the label of "Death Midwife." The College of Midwives of British Columbia has called for death midwives to stop using the label of midwife, specifically with the Canadian Integrative Network for Death Education and Alternatives. The basis of the case is that Louise Aerts, the executive director of the College of Midwives, claims that the term "midwife" is specifically reserved for the traditional sense of the word in relation to birth. The Health Professions Act protects its usage. In response, the CINDEA website has recently added the following disclaimer to their website: "The role and practices of death midwives are frequently referred to on this website. Death midwives are not conventional midwives (who deal with birthing) or health professionals, nor are they registered with any of the Colleges of Midwives in Canada."

Senate Bill 796

There is little legal regulation around death midwifery certification. In comparison, there are multiple regulatory bodies that ensure the education and practices of traditional midwives, such as The Nursing and Midwifery Council.

However, there have been a few measures to regulate and license the practice of being a death doula. In 2009, Senator Vicki Walker from Oregon introduced SB 796. The bill aims to regulate "death care consultants," in other words, death doulas and related professions. After the bill passed in July, death doulas were required to be licensed by the Oregon Mortuary and Cemetery board. The test they must pass to gain a license covers Oregon and federal laws related to the care of dead bodies.

Responsibilities

Although the specific responsibilities of a death doula vary from certification program to program, there are certain parallels through each. The services provided by a death doula can generally be broken down into two categories.

Information

• providing the family with information for alternative death care methods
• researching assisted-living/palliative care options if necessary
• providing medical information and advice in relation to palliative care, ex., issues with incontinence, disorientation, discolored extremities, other symptoms
• acting as a liaison between the family and larger organizations, i.e., the hospital, the funeral home, the memorial chapel

Support

• building a relationship with the terminally ill
• providing spiritual and emotional support for the terminally ill and their family
• advocating for the family in administering the terminally ill's final wishes

Associated fields

Hospice care

The role of a death doula is consistent with the more wholistic approach taken in hospice care. As a result, many hospitals and hospice centers that deal with end of life patients have had their own staff's counselors go through death doula training. This is often carried out specifically through the organization International End of Life Doula Association (INELDA), which provides training sessions across four countries.

Alternative death care movement

The death doula position has been linked to the rise in people thinking of alternative methods of dealing with remains, including green burials and home burials. Overall, there has been a rise from 23% to 37% in home deaths in America from 2000 to 2010. Death doulas are trained to have the knowledge to provide the family with after-life alternative death care options. Many training programs, especially those from private organizations and not public hospitals, involve information on greener methods of body disposition, including liquid cremation, body composting, use of essential oils in body preservation, and biodegradable alternatives to wood or medal caskets previously intended to last as long as possible. The goal of many death doula programs are to provide information for alternative burials where many funeral homes refuse to consider options besides cremation or embalming.