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Receive Personalized Support Through PEN’s New Text-Line

Now, you can receive personalized support from our Network Managers by texting EMPOWER to +1-833-213-6657. Each of our Network Managers is a compassionate volunteer who can offer you their first-hand experience with specific cancer types. Whether you’re a cancer patient, or caring for someone who is, PEN’s Network Managers will be here for you at every step of your journey. 

To introduce how you can benefit from the PEN Text-Line, we’ve shared the following FAQs, but please let us know if you have feedback or further questions.

What number do I text?

+1-833-213-6657

Who will receive and respond to my text messages?

Your text will be received by PEN’s Network Manager Coordinator, who will then connect you to the Network Manager best-suited to support your needs. Additional Network Managers may also respond, as we know it can be helpful to receive more than one perspective.

Your initial message to the PEN Text-Line will receive an auto-response, but please know that it will soon be read and personally responded to by a member of the PEN team! 

What types of support can I receive from the Network Managers?

Through their personal experiences with cancer, PEN’s Network Managers are here to offer you community and connection. You can ask us anything! For example:

  • Cancer-focused guidance
  • Online and in-person support groups for patients or care partners
  • Financing options for cancer treatment
  • Identifying clinical trials
  • Recommended webinars
  • What questions to ask your healthcare team
  • Methods for managing stress, and for living in the moment
  • How to share the news of your diagnosis with loved ones and colleagues

We also encourage you to reach out even if you don’t have a specific question; you are not in this alone—there will always be someone from the Patient Empowerment Network team here to listen and offer encouragement. 

Are there other reasons to engage with PEN’s Text-Line?

Definitely! 

Send us your suggestions for our online content and services. For example: 

  • What topics would you like us to cover more, or less often?
  • Do you have suggestions for PEN’s future Empowered #PatientChats
  • Would you like to contribute articles to the PEN blog
  • Do you want to inspire others by sharing the story of your own path to patient empowerment?

Be the first to receive the latest PEN news by texting the word EMPOWER to the Text-Line. You will then be prompted to choose what notifications you would like to subscribe to. For example:

  • Upcoming PEN webinars and other events
  • New content releases from the Network Managers
  • Wellness boosts, such as notes of encouragement and health tips

Is my interaction with the PEN Network Managers Text-Line HIPAA compliant?

Your messages will always be kept in strict confidence, however the PEN Text-Line is not HIPAA compliant. Therefore, we encourage you to use discretion when discussing specific information such as your or other individuals’ names, diagnosis details, etc. Please note that any advice provided by the PEN Network Managers is not medical advice. We also recommend patients refrain from giving other patients medical advice.

Who can I contact for more information or to provide feedback?

Feel free to email Nykema Mpama at kema@powerfulpatients.org.

Message and data rates may apply 

 

Advocating for Key AML Testing: Advice From an Expert

Advocating for Key AML Testing: Advice From an Expert from Patient Empowerment Network on Vimeo.

Dr. Hetty Carraway, an AML specialist at Cleveland Clinic, shares advice on advocating for yourself when diagnosed with AML, underscoring the importance of asking questions, and including your caregiver as part of the conversation.

Dr. Hetty Carraway is Director of the Leukemia Program at Cleveland Clinic. Dr. Carraway cares for patients with acute leukemia and bone marrow failure states. Learn more about Dr. Carraway, here.

See More From INSIST! AML

Related Resources:


 Treatment Approaches in AML: Key Testing for Personalized Care

 New AML Therapies vs. Traditional Chemotherapy: What’s the Difference?

 Understanding Risk in AML: How Molecular Testing Affects Treatment Options

Transcript:

Katherine:

What advice do you have for patients when it comes to asking for appropriate testing and speaking up in their own care?

Dr. Carraway:            

This is so important. I think patients are leery to stir the pot or be difficult. I think coming from a place of inquiry, teach me about this, that, or the other thing, help me understand this, that, or the other thing – I would like you to show me why this decision or talk with me about why this decision versus another decision might be better for me compared to somebody else.

I can’t underscore the importance of advocating for yourself and asking questions about why am I getting this drug? What are the side effects to this drug? What is my prognosis? What is different about my case versus somebody else’s situation? How do I best prepare myself in getting ready for the therapy that I’m about to go through?

Those are all important questions that patients should ask. They should certainly have people, if possible in their family be advocates for them. I welcome that, and I think that that’s a really important part of going through this type of therapy for any patient. Your physician should welcome having your involvement in that. Don’t be shy about that. It’s your health, and any investment in that the most important people in that is inclusive of you and your caregivers. They should be a welcome part of the team.

Changing the Caregivers’ Refrain

I’ve spent the past two years since my Mom’s death wondering if I could have — no, I’ll be totally honest with you — wondering if I should have done more. If only I had looked into clinical trials while she still met the inclusion criteria. If only I had sought out and demanded that she see an expert sooner. If only I had been more patient, more present, more supportive. All of this because no matter how much you give of yourself as a caregiver, you’re always left feeling like you could, no, should have done more. Guilt, fear, exhaustion and stress are the refrain we caregivers hear, on continuous repeat, in our heads.

But what if we could change this? What if we, collectively as a community, could provide the support and encouragement that caregivers need? What if we worked together to change the refrain they (we) hear to something more positive?

My Mom, Shirley, was diagnosed with Inclusion Body Myositis (IBM) in 2008.  IBM is a relatively rare inflammatory muscle disease characterized by progressive muscle weakness and wasting. Her diagnosis came after years of our family telling her that the weakness she felt and her frequent falls could easily be solved if she just exercised more often.

Towards the end of her life she was unable to leave the house or even get out of bed. Her muscles had wasted to a point that she couldn’t move her arms or legs. She couldn’t even swallow. My Dad and I took care of her at home until she was admitted to hospice and died shortly thereafter.

The Family Caregiver Alliance reports that 34.2 million Americans have or are providing (unpaid/family) care to an adult aged 50 years or older[1].  48 percent of caregivers are between the ages of 18-49. This means that most caregivers are starting or already have families of their own to care for, careers to build and tend to, and other commitments beyond their role of caregiver.

Being a caregiver was hard. Literally, the hardest thing I’ve ever done. But looking back on it, I realize just how lucky I was. I had a committed co-caregiver in my Dad. I have an incredibly supportive husband who, without hesitation, agreed to move closer to my parents.  I also have a great support system of friends and colleagues. Not all caregivers are as lucky. Caregivers report feelings of isolation, chronic stress, depression and symptoms of declining health. Many caregivers have no one to turn to for support and encouragement. They have no one to “cover” for them when they need a break.  No one to talk to when they feel that they just can’t continue on another day.

This is why my organization, Patient Empowerment Network, is trying to grow the Empowered Patient Facebook Group. We want it to be a safe, supportive place where patients and caregivers can find the help they need, even if it’s just to swap stories or learn a new “caregiver hack” to make life a little easier. We want to work with you and for you to build a community of empowered patients and caregivers.

A dear friend once told me that we do the best we can in the moment we’re in. Maybe that’s a cop out but, having been a caregiver, I believe it’s true. The trick is reminding ourselves and each other that it’s true. I encourage you to use this community to help share that reminder and, hopefully, change the caregivers’ refrain.


[1] [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]

Mental Health & Cancer

Anxiety, fear and depression are commonly associated with life-changing events – especially cancer. People with cancer may find the physical, emotional and social side effects of the disease to be stressful. This stress may result from changes in body image, changes in family or work roles and physical symptoms due to treatment. Family members and caregivers often feel these same stressors, as they fear the loss of a loved one. They may feel angry because someone they love has cancer, frustrated that they “can’t do enough,” or stressed because they have to take on more at home. So many of these feelings are completely normal, but what is typical and when may outside help be needed?

According to The American Cancer Society, signs that the patient or a loved one may need help are the following:

  • Suicidal thoughts (or thoughts of hurting himself or herself)
  • Unable to eat or sleep
  • Lacks interest in usual activities for many days
  • Is unable to find pleasure in things they’ve enjoyed in the past
  • Has emotions that interfere with daily activities and last more than a few days
  • Is confused
  • Has trouble breathing
  • Is sweating more than usual
  • Is very restless
  • Has new or unusual symptoms that cause concern

If you or a loved one have experienced one or more of the above symptoms, there are many options for help.

Speak with your cancer team

If you find any of the above symptoms to be true, one of the first steps may be talking with your cancer team. Your team should be able to answer any questions, talk about your concerns, and, if needed, refer you to a mental health professional. Anxiety occasionally stems from the fear of uncertainty from treatment or medication side effects, so knowing what to expect may be the first step in coping.

Seek support

Once you have spoken with your cancer team and support system to determine a treatment plan, put it into action! Any of the below activities may supplement the treatment prescribed by your doctor in making both you and your loved ones feel less alone and anxious during this difficult time:

Get moving

Exercise has been proven to improve individuals’ quality of life and physical functionality. Though rest and relaxation are crucial to maintaining a healthy mind and body, regular exercise may help maintain and even improve your health. Exercise may help during treatment by improving balance and physical abilities, lowering the risk of osteoporosis and heart disease, and lessen nausea. Even more importantly than physical health, exercise may improve patients’ self-esteem, mental health and quality of life.

Every individuals’ physical needs and potential are different, so it is important to speak with your doctor about what exercises are best for you. Because the stage and treatment plan for cancer patients differ, so may each patients’ stamina and strength. Staying as active and fit as possible is essential to maintaining physical well-being during treatment, so tailoring an exercise program that fits your ability and preference is essential.


Resources:

cancer.org

cancer.gov

A Person Centered Approach To The Care Of Chronic Illness

The World Health Organization has called chronic conditions ‘the health care challenge of this century’. According to the latest figures released by the Centers For Disease Control and Prevention about half of all adults have one or more chronic health conditions; and one of four adults have two or more chronic health conditions. Long-term diseases, such as heart disease, stroke, cancer, type 2 diabetes, and obesity are the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. A landmark paper, published on 9 July 2016 in Nature Reviews, reports the prevalence of global diabetes has been seriously underestimated by at least 25 per cent.

These figures are alarming, but what is equally alarming is that despite the prevalence and seriousness of the situation, our medical system is not structured to adequately respond to chronic illness. Our current health systems are designed to prevent, diagnose and treat acute medical conditions. The problem is not that people with chronic diseases do not receive care; rather, the acute care model ignores the fundamentally different approach that is needed to care for people with chronic conditions. Furthermore, this model leaves little room for the psycho-social dimensions of chronic illness; it addresses parts of diseases or small sub-parts of the body, but it does not address the person in a holistic way.

How can we begin to address this disconnect in a healthcare system which cares for pieces of people, rather than the whole person?

I believe the answer lies in adopting a person-centered approach to the care of the patient (while you may find the term patient-centered care is more widely-used, I prefer to use the more all-encompassing person-centered care as it focusses on the whole person). Describing the person-centered care approach, Dr Ronald Epstein, MD and Dr Richard Street, PhD characterize it as one in which “patients are known as persons in the context of their own social worlds, listened to, informed, respected, and involved in their care.”

Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions, was recognised as a dimension of high-quality health care in the 2001 Institute of Medicine (IOM) report Crossing The Quality Chasm; An New Health System for The 21st Century as one of six quality aims for improving care. The IOM report drew on research conducted in 1993 by the Picker Institute in conjunction with the Harvard School of Medicine 1 which identified eight dimensions of patient-centered care.

These eight principles provide a roadmap for a person-centered approach to the care of chronic illness.

1. Respect for patients values, preferences and expressed needs

A fundamental tenet of person-centered care concerns putting people and their families at the center of clinical decisions. Each patient brings his/her own unique preferences, concerns and expectations to a clinical encounter and these values should be integrated into decisions if they are to serve the patient. Patients have a right to be part of the decision making process. This is best achieved through the model of shared decision making, the conversation that happens between a patient and their health professional to reach a healthcare choice together. At the very heart of shared decision making is the recognition that healthcare providers and patients bring different but equally important forms of expertise to the decision-making process. Patients and their families will bring their experience of living with a disease, their social circumstances and preferences. This is particularly relevant in chronic health conditions where the patient may have many years of experience of their symptoms and responses to treatments.

2. Co-ordination and integration of care

Research shows that patients highly value coordination of their care, seeing it as an important component of overall quality, especially when they have chronic health problems and complex needs. The reality however, is a patient with a chronic condition often receives care from multiple healthcare providers who may work independently from each other. This fragmented system affects the follow-through and co-ordination of care patients receive.

3. Addressing patients’ information, communication and education needs

Patients differ in their views about how much information they want. In some cases, patients want a lot of information and in other cases patients may delegate decision making entirely to healthcare professionals. The goal of patient-centeredness, according to the IOM report, is to customize information to the specific needs of each individual; that is, to modify the care to respond to the person, not the person to the care. Information needs to be much more easily available and understandable and a concerted effort made to strengthen health literacy for all patients.

4. Physical comfort

Attention to physical comfort implies timely, tailored and expert management of symptoms such as pain or other discomfort. Person-centered pain management takes into account not just the physical aspect of pain, but also the psychological, social, and spiritual aspects of health and disease.

5. Emotional support and alleviation of fear and anxiety

Fear and anxiety associated with illness can be as debilitating as the physical effects. As defined by the Institute of Medicine, patient-centered care attends to the anxiety that accompanies all injury and illness, whether due to uncertainty, fear of pain, disability or disfigurement, loneliness, financial impact, or the effect of illness on one’s family. Chronic illness affects every aspect of our lives and patients face a range of stressors from medical management of our illness, to dealing with changes in family life, work life or student life. The psychological effects of chronic illness can be profound. Individuals with chronic illness are more likely to be depressed, especially those who experience greater levels of pain and disability. In a paper published in the Western Journal of Medicine authors Jane Turner and Brian Kelly examined the emotional dimensions of chronic disease. They concluded that:

  • The emotional dimensions of chronic conditions are often overlooked when medical care is considered
  • Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health
  • Clinicians can play an important part in helping their patients to maintain healthy coping skills

6. Involvement of family and friends

The sixth dimension of patient-centered care recognises the key role of families and friends in supporting and caring for a chronically ill person. It focuses on accommodating family and friends on whom patients may rely, involving them as appropriate in decision making, supporting them as caregivers, making them welcome and comfortable in the care delivery setting, and recognizing their needs and contributions.

7. Continuity and transition

Every episode of care involves various individuals and oftentimes multiple transfers between different health care settings. Poor communication during transitions leads to increased rates in hospital readmissions, medical errors, and poor health outcomes. Most patients and family caregivers are not encouraged to play an active role when a transition in their care occurs, even though they are often the only constants in the transition.

8. Access to care

Patients need to know they can access care when it is needed. In interviews conducted by Picker, patients indicated the following areas were of importance:

  • Access to the location of hospitals, clinics and physician offices
  • Availability of transportation
  • Ease of scheduling appointments
  • Availability of appointments when needed
  • Accessibility to specialists or specialty services when a referral is made
  • Clear instructions provided on when and how to get referrals.

Ideally patients should have access to the right service at the right place at the right time. This may take place outside the traditional healthcare setting, as Meredith Dezutter, who applies human-centered design to improve the lives of patients, caregivers and providers through her work at Mayo Clinic’s Center for Innovation, points to: “It may mean making medical knowledge more accessible and supporting local care decisions, offering online support or video appointments or even connecting the patient with resources in his or her community.”

For too long, patients have been grouped into a single homogenized category, and treatment approaches to care generalized. This ignores the reality of chronic illness which presents in different ways. Treatment of chronic conditions requires an individualized, multifaceted approach. Care is enhanced when there is sensitivity for the context of the illness experience. Person-centered care is a method of care that treats the patient as a person within the context of their lives, family and community support, mental and emotional state, beliefs and preferences. It is based on good communication and a partnership approach between clinician and patient with the aim of improving patient self-management, care outcomes and satisfaction. PhD student and health researcher, Doro Bechinger-English, who was diagnosed with breast cancer in 2010, believes that person-centered care facilitates a closer connection between a patient and healthcare provider. “The healthcare professional shows their presence by connecting with me as a patient and a person”, she says. “Person-centered care also means being open to my values, anxieties, concerns and preferences however small or alien they seem to be.”

Redesigning our healthcare systems to adopt a patient-centered perspective is not without its challenges in an acute care system that is primarily reactive, but ultimately doesn’t every patient deserve to be treated in a system in which he or she feels known, respected, involved, engaged, and knowledgeable about their own care?

1 Gerteis M, Edgman-Levitan S, Daley J, Delbanco T. Through the patient’s eyes: understanding and promoting patient-centered care. San Fransisco: Jossey-Bass; 1993

 

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