Inspiring New Game, Go Wish, Makes End of Life Decisions Simple for Mesothelioma Patients
By: Jenna Campagna, RN on December 2, 2016
“Go Wish,” may be able to help cancer patients and caregivers discuss an uncomfortable topic: end of life care. Predicting life expectancy can be challenging for most doctors, especially with a rare cancer like mesothelioma. Go Wish is a card game about end of life wishes, focusing on a patient’s goals and priorities no matter the life expectancy.
For patients, it is a great way to understand what is most important to you. For caregivers, it is a great way to understand how the patient wants to be treated, who they want by their side, and what matters most to them. For family members, it is a way to understand how to comfort your loved one.
Go Wish
There are a few simple ways to play Go Wish: you can play by yourself, with a loved one, or for free online. Each deck of the game contains 36 cards, one being a “wild card”. The other 35 cards describe things that patients often say are important when they are faced with illness or cancer. The cards are easy to understand and are written in a positive tone.
The patient sorts through the cards and places them into 3 piles:
- Very important to me
- Somewhat important to me
- Not important to me
The wild card can be used to write down a wish that isn’t listed. Next step is to take the “very important” pile and to rank those in order of priority, choosing only 10 cards. This is your top 10 list to share with your loved ones and doctor.
The creators of the game, Coda Alliance, stated, “The key is to identify the 10 most important things you want to make absolutely sure are clear to anyone who might have to speak on your behalf or make decisions for you.”
Hospice & Palliative Care in Mesothelioma
End of life discussions should be taking place whether a mesothelioma patient is enrolled in palliative or hospice care. Palliative care prevents or treats symptoms of disease or treatment. Palliative care may be given at any time during a person’s diagnosis whereas hospice care is given to patients who only have a few months to live.
Due to the nature of the disease, many patients are given palliative care options as their treatment options for mesothelioma. This is common among stage 3 and stage 4 patients whose cancer is unresectable. The goal of each type of care is to improve the patient’s quality of life by controlling the physical and emotional pain of the disease.
Research shows that cancer patients who communicate their emotional needs have an improvement in their quality of life.
Psychological, social, and spiritual distress are often additional symptoms among mesothelioma patients at these stages. Playing a game of Go Wish helps patients decide on what they need and what they should focus on, relieving some of those stressors.
10 Most Common Go Wish Results
MD Anderson Cancer Center recently held a randomized trial with 50 cancer patients who all played the Go Wish game.
The 10 most common wishes that were part of the “very important” pile were:
- Be at peace with God
- Pray
- Have family present
- Be free from pain
- Not be a burden to my family
- Trust my doctor
- Keep my sense of humor
- Say goodbye to important people in my life
- Have my family prepared for my death
- Be able to help others
Hospice Care Expectations
Hospice care is an end-of-life support intended to make patients as comfortable and pain-free as possible in their final months. Most patients receiving this type of support do not have a long prognosis – specifically six months or less.
Common wishes among mesothelioma patients are to trust their doctor, be pain free and make sure their family is prepared. Hospice care can help make these wishes come true with the various support it provides to patients and loved ones. Some of the support services hospice care often provides includes anticipatory loss or bereavement counseling, advice sessions for caregivers, assistance programs for funeral arrangements and naming beneficiaries.
Patient-Focused Care
There are different levels of hospice care offered to mesothelioma patients based on their prognosis.
Home hospice care is the most basic level of hospice care. Care providers come to the patient’s home and provide palliative treatment. Nurses visit a few times a week – sometimes more often depending on the patient’s condition. Home hospice care may also offer emotional support.
Inpatient hospice care occurs at a hospital or another medical facility. This level of hospice is for patients who need on-site care and support. Hospice care providers work with the patient’s medical team to coordinate treatment. Inpatient care provides around-the-clock relief for symptoms and emotional distress.
Many mesothelioma patients in their final stages need regular attention but don’t need to stay in a hospital. Aside from home and inpatient hospice care, patients can be treated at an assisted living center or nursing home. Patients aren’t required to receive hospice care from these facilities. There are also dedicated hospice facilities.
Discussing life wishes with a loved one is never an easy conversation. Because of Go Wish, these conversations have become a little easier. It’s important to understand a loved ones’ wishes to help them receive the best care. Hospice care is a common form of care many patients turn to in their end-stage of life. A patient’s family and hospice care provider have one common goal: making the patient as comfortable as possible in their final stages.
If you or a loved one are considering making the transition to hospice care, consult a trusted care provider to help with this important decision.
About the Writer, Jenna Campagna, RN
Jenna Campagna is a registered nurse and patient advocate who is passionate about helping mesothelioma patients navigate their health care. She has over seven years of experience working with patients diagnosed with rare diseases including mesothelioma. Jenna is also a member of the Academy of Oncology Nurse & Patient Navigators and her goal is to connect patients to top mesothelioma specialists, treatment facilities, and clinical trials. Through her writing, she aims to simplify the complicated journey through mesothelioma by offering helpful tips and advice.
