The PMP Pals’ Network Mentor Program Guidelines
Thank you for volunteering to serve as a PMP Pal Mentor to a Patient or Caregiver!
The PMP Pals’ Network believes that confident, well-educated patients experience a stronger and faster recuperation than do patients who are poorly informed and fearful of surgery.
We base this belief on our own personal experiences as patients and caregivers.
The PMP Pals’ Network assists patients and their caregivers (whether family or close friend) in preparing for surgery or chemotherapy, or recovering from treatment, by linking them directly with specific Pal Mentors who have been personally selected to assist each individual patient. Though the focus of the Mentor Program is on newly diagnosed patients and their caregivers, we also assist patients and caregivers facing recurrences and other significant treatment events.
Pal Patients and Pal Caregivers communicate with their Pal Mentors via telephone, personal visits, email, SKYPE and postal mail.
Among the topics that Pal Mentors may assist patients and their caregivers in addressing are:
- Questions to ask the specialists
- Suggestions for transportation, lodging, and meals near hospitals
- Observations of patient care at the hospital of choice
- Pre-op preparation for CRS surgery, including HIPEC
- Pre- and post-op infection prevention
- Post-op adjustment to ostomies and gastrectomies
- Diet and nutrition
- Returning to the workforce following recuperation
- Resumption of personal intimacies, post-op
- Applying for health insurance, Social Security disability, and other benefits
Help us maintain the integrity of our Pal Mentoring Program by following these guidelines:
- Do not provide medical advice. Even if you are a licensed healthcare professional, medical advice should be provided by the patient’s own medical professionals.
- Be positive; encourage confidence and hope. Do not share “scary stories” about your own diagnosis. The mentoring program is not a therapy session either for you or for the patient/caregiver you are mentoring. It is likely that the patient will ask, “Weren’t you scared when you were diagnosed?” Suggested answers are:
- “I understand how you feel” or
- “Yes, I too was very anxious, but I focused on recuperating and moving forward. Now that I have recuperated, I am living a busy life again!”
Be truthful and fact-based when the patient inquires about the challenges presented by the surgery itself, but do not dwell on their fears. It is likely that the patient has already read or “heard” fearful information via the Internet. Our purpose is to assist patients in overcoming their fears and focusing on the future so that they can resume their healthy lives again. You might say “I understand from my own experience that this surgery is very challenging, and I am here to assist you today in getting through your surgery.” You also might mention some of the activities you enjoy today such as returning to work, family life, travel, sports, and hobbies.
- Look to the future and celebrate progress. Help the patients to set goals for the future and look forward to milestone events. You can talk about the milestone events in your life following your surgery. Have you attended the graduation of a loved one? A wedding? Welcomed a new baby into the family? Traveled? What milestones have you experienced that made the challenges of surgery worthwhile to you and your family? Help the patient recognize and celebrate progress towards goals.
- Use correct terminology to promote accurate perception and understanding. Do not refer to surgery, our disease, or its treatments with slang colloquialisms. Descriptions such as “MOAS” are discouraged within the PMP Pals’ Network as they are negative stereotypes and reinforce the fear factor associated with this disease.
- The correct, medically-recognized descriptions for our surgery are simply “surgery”, Cytoreductive Surgery, or CRS.
- The correct, medically-recognized descriptions for our heated chemotherapy treatment are HIPEC or heated chemotherapy.
- The correct medically-recognized description for our disease is Pseudomyxoma Peritonei. “PMP” is simply an abbreviation of Pseudomyxoma Peritonei. When researching information regarding our disease, the appropriate search term is Pseudomyxoma Peritonei. For related diagnoses, see information on the PMP Pals’ Network website www.pmppals.net.
It is important that you help the patient or caregiver learn the correct terminology. If the person you are mentoring uses slang colloquialisms during your conversation, respond using the appropriate terminology and gently encourage the use of appropriate words to promote accurate understanding and perception.
By educating ourselves, other patients/caregivers, and the public about the appropriate terminology, we help to ensure respect for our disease, including consideration of research funding and approval of treatment coverage by our insurance healthcare providers.
1. Share specific strategies that helped you. Cite positive examples of factors that helped make your recuperation successful, such as
- your attitude,
- finding a skilled surgeon or other specialist whom you trusted,
- spiritual and religious comfort,
- support of family and friends,
- focusing on setting goals for the future and reaching milestones
- whatever worked in a positive fashion for you!!
2. Do not talk negatively about or slander physicians or other healthcare professionals. If a patient or caregiver asks your opinion about a healthcare provider that you don’t like or downright disagree with, you can simply say, “I chose not to be treated by Dr. So and So; I was more comfortable with the doctor I selected.” Do not elaborate. It is not uncommon for physicians and prospective patients to disagree. We have many different “personality types” and specialists to choose among.
It is common for patients and their caregivers to develop a special affinity and loyalty to their own surgeons. If a patient asks you why you like your particular surgeon, be specific and provide factual examples, such as
- “He always takes the time to answer my questions” or
- “She provided me with several options and included me in the decision process of selecting which option was the best for me” or
- “He returns my phone calls promptly” or whatever qualities that you believe are helpful and important to share.
- Respect the patient’s choice of surgeon and hospital. Recognize that most of our fellow Pals have health insurance restrictions, family issues, and financial considerations that affect their selection of surgeons and treatment centers. Each Pal has a unique set of circumstances.
For “veteran” patients of Dr. Sugarbaker: please keep in mind that due to a limited schedule and other factors, Dr. Sugarbaker restricts the number and type of cases he accepts. If you have been treated by Dr. Sugarbaker, and the patient you are monitoring will not be treated by him, please refrain from making the patient feel that he will not receive optimal care from any other surgeon. Many of our surgeons have studied extensively under the tutelage of Dr. Sugarbaker and respect him tremendously. It is likely that the patient you are mentoring will not be a patient of Dr. Sugarbaker, but please reassure the patient that he/she will be in very capable hands.
- Acknowledge the special and important role of the caregiver, generally a spouse, parent, or sibling but sometimes a close friend. The caregiver will serve in the most important role, that of patient advocate. The caregiver must speak up for the patient when the patient is unable to do so. Help the caregiver think through what issues might come up and be alert to subtle changes in patient condition that could require medical attention. Encourage the caregiver to speak up and ask questions!
Stress infection prevention. Because the caregiver sees many medical staff come and go in the patient’s hospital room, infection prevention is a core part of patient advocacy. The caregiver must be diligent in reminding everyone who comes in contact with the patient about strict adherence to infection prevention techniques. Complications from infection can be as much of a concern as the surgery itself. Therefore, we stress infection prevention on www.pmppals.net, in our PMP Pals’ Handbook: Preparing for Surgery, and in our PMP Pals’ Newsletters. Please ask caregivers to educate themselves about infection prevention and encourage them to speak up to protect their loved ones against infection.
- Questions? Contact your mentor coordinator or contact PMP Pals’ Network at email@example.com. Also, please review our new website at www.pmppals.net. This new website is the central access point for information of interest to patients and caregivers, as well as mentors. Throughout 2015, we will be working to combine the legacy PMP Pals’ Network website www.pmppals.org. Until we finish moving the information from our legacy website onto our new website, please use the link on our new website to access the wealth of detailed information still available on our legacy website. As we move through 2015, we will be re-locating more information from the legacy site to our new site to make it easier to find, so stay tuned!
Don’t forget to review our caregiving tips on the CAREGIVERS link at www.pmppals.org (under “TREATMENTS”) as well as those outlined in our handbook, PMP Pals’ Handbook: Preparing for Surgery and in our PMP Pals’ Newsletters.
Once again, THANK YOU for agreeing to serve as a PMP Pal Mentor!
Copyright©2015 PMP Pals’ Network. //All rights reserved.
The PMP Pals’ Network owns all rights to this and all other articles and web pages produced and copyrighted by the PMP Pals’ Network. This article or portions of it may not be reproduced without written permission from the PMP Pals’ Network.
Information on the PMP Pals’ Network website or provided by a Pals Mentor is not intended as a substitute for licensed, professional medical advice. Each patient’s case is unique. Patients should seek the counsel of their own licensed healthcare professionals.