The former beauty queen stared into the camera, but this was no pageant or performance. Bloggers like Miles Levin, an 18-year-old who had a rare soft-tissue cancer and died in 2007, and Michelle Lynn Mayer, a 39-year-old mother who had scleroderma and died in 2008, shared their thoughts on living and dying, too.
Markvoort started her blog in 2006 because hospitalized patients with cystic fibrosis were isolated because of infection. Alone in her hospital room at Vancouver General Hospital after visiting hours, she sought to connect with other patients by finding them online.
But less than two years later, her body began rejecting the organs. Her lung capacity dwindled, and every breath became laborious.
Terminal illness is a medical term popularized in the 20th century to describe an active and malignant disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease which will end the life of the sufferer.
The blog’s name 65_RedRoses, originated from her childhood inability to pronounce cystic fibrosis; she, as have many other children with the disease, called it “65 roses.” Markvoort added the word red because it was her favorite color.
Markvoort was the subject of a Canadian documentary also called “65_RedRoses.” It showed her harrowing experiences with the disease: violent coughing, vomiting, IVs, the painful procedures that made her scream.
Sometimes, her blog posts were raw, filled with “episodes of projectile vomiting, hours of gasping for breath, waves of nausea lulling out into hours of sleepiness.”
She championed cystic fibrosis awareness and organ donations. From Los Angeles to Poland, letters, stuffed animals and cards poured into her hospital room.
She looked frail and thin, and her hair was rumpled. But Eva Markvoort smiled weakly.
In the Internet age, many people reflect on their lives through video, personal blogs and larger websites such as CaringBridge.org, where people who have major health events connect and share online.
A cultural shift has occurred, he said, referring to columnists and Randy Pausch, a computer science professor at Carnegie Mellon University, who discussed their impending deaths with frankness. Pausch’s last lecture, urging students to fearlessly pursue their dreams, went viral on YouTube in 2007, getting more than 11 million views.
For the person with a terminal illness, life does not abruptly stop and a caregiver is often needed. The caregiver may be a nurse, licensed practical nurse or a family member. The individual may require assistance from a caregiver to receive medications for pain and to control symptoms of nausea or vomiting. Moreover, the caregiver can assist the individual with daily living activities and assist with ambulation. Caregivers also provide assistance with food, psychological support and ensure that the individual is comfortable at all times.
- The individual experiences excessive pain
- The individual is in distress or having difficulty breathing
- One has difficulty pass in urine or is constipated
- If the individual has fallen and appears hurt
- Is depressed and wants to harm him/her self
- The individual will not take the medications prescribed
- The caregiver does not know how to handle situation
- Anticipatory grief
- Do not resuscitate
- Interventionism (medicine)
- Liverpool Care Pathway for the dying patient
- Advance health care directive