Tag Archive for: caregiving

Breaching Cultural Barriers in Cancer Caregiving

Humanity is diverse with no two persons being alike. We all face our own struggles, we all have our own ways of handling the hardships life throws at us. While we all may face similar obstacles, that doesn’t mean that each encounter is the same. Cancer comes in many forms with many faces and each person’s experience with it is incredibly unique.

Because the struggle with cancer is as diverse as the people who handle it, it’s imperative that healthcare providers and caregivers alike strive to understand the values and perspectives that shape the cancer patient’s approach to treatment. Among the most important aspects of this is in learning to breach the cultural barriers involved in cancer caregiving.

The Significance of Transcultural Nursing

Culture plays a powerful role in nearly every aspect of human life. It shapes what we do and it informs how we see others, how we see ourselves, and how we see our world. Culture also plays a pivotal role in defining how we understand and respond to illness.

For this reason, the effort to understand a patient’s culture is essential in providing high-quality care. This is where transcultural nursing comes in, particularly when it comes to caring for marginalized and traditionally underserved patient populations, such as low-income patients who live in remote areas.

At the heart of transcultural nursing is the effort to understand how a patient’s culture has influenced their health practices. Transcultural nurses leverage this understanding to devise personalized treatment plans that not only serve the patient’s health needs, but that also respect and align with their personal values and beliefs.

Such efforts are especially critical in cancer care, when recommended courses of treatment may sometimes clash with the patient’s wishes. All too often, indeed, healthcare providers may unwittingly dismiss, disparage, or disrespect a patient’s worldview and in the process undermine their right to bodily autonomy simply because the patient’s perspective does not line up with the practitioner’s view of “the science.”

A transcultural approach to patient care, though, can go far in making the exam room a “judgment-free” zone. If we want patients to be truly empowered, if we want them to enjoy and to exercise the self-determination that is their right, then they must first understand that clinicians will respect their beliefs without judgment, even if they do not share them.

Cultivating a “judgment-free” environment in the healthcare system is often the first, most difficult, and most important step in the process of shared decision-making, a process in which the patient’s self-defined goals, needs, and values carry as much, if not more, weight than the clinical data.

End of Life Care

Though hundreds of thousands of people around the world are winning their fight against cancer every day, the reality remains that, for some, victory over cancer will not mean survival. It will, rather, be defined not only by how the patient chooses to fight but also by how they choose to withdraw from it.

And this, too, is a decision that is often deeply imbricated in the patient’s cultural perspectives on illness, death, and dying.

If the patient is a person of faith, for instance, then they may be unwilling to undergo invasive surgeries or grueling treatments to prolong their lives. Healthcare providers and caregivers must endeavor to understand patients’ views of their own mortality and how these shape the patient’s choices regarding treatment.

Considering the Caregiver

As important as it is for care providers to understand the patient’s culture, it is equally important for caregivers to carefully reflect on their own values, perspectives, and beliefs, as these can and do strongly influence patient care practices, even at the subconscious level.

For instance, cultural values regarding quality-of-life issues may compel healthcare teams and informal caregivers alike to unconsciously scale back in their efforts with those patients whom they believe are enduring a “life not worth living.” These cultural perspectives also often obfuscate the fact that quality of life assessments are highly subjective and that these may easily conflict with the patient’s and family’s perspectives on what makes life worth living.

In the case of cancer care, for instance, patients and families may be willing to pursue a litany of experimental treatments, treatments that may seem both outrageous and futile to healthcare providers, who may feel that the patient has long since exceeded the subjective threshold for the “intolerable” quality of life.

In such cases, a caregiver who does not understand the personal and cultural factors informing quality of life perspectives is unlikely to be able to build the kind of trusting, respectful, and supportive relationships that patients need from their healthcare team.

The Takeaway

In many ways, culture defines who we are, what we do, and what we believe. It also strongly shapes our views about and responses to potentially life-threatening illnesses, such as cancer. For that reason, it is incumbent on caregivers to break through the cultural barriers separating them from their patients. Only then will patients enjoy the respectful, empathetic care they deserve.

How Can Care Partners Combat Burnout?

How Can Care Partners Combat Burnout? from Patient Empowerment Network on Vimeo.

Care partners Diahanna, Sherea, and Patricia discuss how they have learned to overcome burnout. Often times when caring for a loved one, we don’t even realize the burnout until after the fact. As care partners, you have to know when to step away and take time for yourself, so you can effectively care for and support your loved one. 


Transcript

Diahanna:

Hello, we’re going to talk about care partner burnout. So the question I would like to pose is, how would you describe caregiver burnout? And how do you feel it coming on? And how can you counteract it? And Patricia or Sherea, either one of you can answer those questions, it would be great to hear from you.

Patricia:

Let me just start with, I have been a caregiver. Although I am right now experiencing multiple myeloma, my father had multiple myeloma and passed in 1990 and I was his caregiver. At that time, a very young person. So, he actually had to have part of his breast bone removed and they left the wound open, and it had to be pack everyday, twice a day with gauze and an iodine thing. And so, my mom could just not do it and my though was, well she can’t, I have to. So every morning before work, I would go and take care of him in that way. Every evening when I came home from work, before he went to bed, I would go over and do the same thing. And that went on for several months. Because I was young and because I really did not have any understanding of what as going on with my father. I mean multiple myeloma, what is that? Not like today. Today there is information. You know you go online, you can find the information. It worked out anyway that I was able to take care of him. I didn’t know that I even had a burnout cause I just continued to do what I was doing. I worked everyday, I had three kids, you jut do what you have to do and I think that’s what most caregivers get to a point of saying to themselves, “I’ll do what I have to do”. And whether they know they have burnout or not, they just do it.

Diahanna:

You know, I think that is very interesting, Patricia, because I think women have a tendency to do that more so than man because we are already maternal. We’re caregivers.

Patricia:

Yeah.

Diahanna:

And we, if someone else drops the ball, and you know we are used to being on call 24 hours a day, 7 days a week, vacation or not. And so, we do always step in and tack up the slack and put ourselves on the back burner. A lot of the time we don’t realize we’re burnout until after the fact.

Patricia:

Way after.

Diahanna:

And we have no more energy. We have nothing else to give ourselves. So Sherea, how would you describe it? How would you look at this?

Sherea:

I would describe…I was a caregiver for my father, now I’m doing some caregiving for my mother who is having some memory issues. And what I can tell you about the feeling is, the feeling of being overwhelmed, the feeling of pressure, and what I notice with is that I have a short fuse. When I’m feeling burnout, things that normally would just not be a problem become an issue. And so, what I try to do is recognize that I’m having a moment and that I’m going to need to step away for a little bit and get recentered. And I do understand that yes, as women, we just do what we have to do, but there does come a point where you have just had it. You’re at the end of the rope. And I’m starting to recognize that more. So it is a feeling of pressure and just being overwhelmed. And the moment I start feeling it, it used to be I kind of just keep pushing, but now the moment I start feeling it, ok let’s work on that now so it doesn’t become an issue later.

Diahanna:

Mhmm. I can appreciate that. When I was taking care of my husband, I probably put myself in a position where I was taking care of him at times when he didn’t need to be taken care of. It was that thing as I felt I could do better or more for him that he probably didn’t know about or I thought he didn’t know about. And I was mistaken on that. It got to the point where I wasn’t sleeping, there was a lot of anxiety, a lot of stress, I wasn’t eating well, and I was getting colds all the time, which I normally wouldn’t get. So my immune system, everything, was messed up as a result of what I was doing. And I remember coming home from work thinking I can’t do this anymore. If I’m going to be a partner to him, I have to step aside. And I called because I was going to every appointment, I was looking at everything, I was doing all the research because he thought he didn’t have to research as long as he felt good, everything was ok. He said, “I’m going to let you be the person that worries because I know you worry enough for the both of us.” And I did. I worried enough for everybody in the household and it was taking me down a path of being mentally, physically, emotionally stressed. And I had to step away and say, “Honey, I don’t need to go to all your appointments. I don’t need to continue to do this.” And that’s how I realized that I was doing way too much and that I was going to be doing a disservice to him – to everybody in my household.

What Role Can Care Partners Play in Advocacy?

What Role Can Care Partners Play in Advocacy? from Patient Empowerment Network on Vimeo.

Care partners can play many roles in advocacy. Diahanna, Sherea, and Patricia discuss that as a care partner you have to stay knowledgeable and up to date about various treatments and discussions happening in your loved one’s disease area. Diahanna shares a time where she had to advocate for her late husband by speaking up to the nurse and nearly saving her husband’s life. She also expresses that as care partners, you cannot be afraid to ask questions on behalf of your loved one.

Care Partner Tips for Communicating with Healthcare Teams

Care Partner Tips for Communicating with Healthcare Teams from Patient Empowerment Network on Vimeo.

Ensure that you are in a position to ask the right questions of your healthcare team. Diahanna suggests familiarizing yourself with various online resources so you are aware of the potential needs of your loved ones. Watch as care partners, Diahanna, Sherea and Patricia share more crucial tips to help others communicate with one’s healthcare team.

Resources for New Care Partners

Resources for New Care Partners from Patient Empowerment Network on Vimeo.

Sherea explains that you cannot move forward, unless you are able to acknowledge all the feelings that may come with the initial diagnosis of your loved one. Watch as care partners Diahanna, Sherea, and Patricia also share their tips and go-to online resources for new care partners.

Is There a Difference Between Care Partner vs Caregiver?

Is There a Difference Between Care Partner vs Caregiver? from Patient Empowerment Network on Vimeo.

The term caregiver is generally more recognized around the world. Care partners Diahanna, Sherea, and Patricia share that being a care partner is generally more intimate than being a caregiver. Care partners are those who are taking care of family members and loved ones whom they’ve known before any initial diagnosis.

How to Seek Help as a Care Partner

How to Seek Help as a Care Partner from Patient Empowerment Network on Vimeo.

When in need of help care partners Diahanna, Sherea, and Patricia share that you should not be shy. There is a tendency for care partners to deny help, but if you are burned out while caring for a loved one you are no good for them or yourself. Diahanna explains caregiving to be a very humbling and rewarding experience.

What Should Healthcare Providers Know About Care Partner Burnout?

What Should Healthcare Providers Know About Care Partner Burnout? from Patient Empowerment Network on Vimeo.

Care partners are often able to fill in any gaps at appointments with their loved ones. Sometimes information at a visit can go in one ear and out the other for a patient as it can be traumatic experience. Care partners Diahanna, Sherea, and Patricia discuss that providers should know that burnout is real and it is important to not only discuss the needs of your loved one, but discuss your needs as well.  

How an MPN Care Partner Handles Burnout

How an MPN Care Partner Handles Burnout from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Summer and Jeff discuss care partner burnout. Jeff is the caregiver of Summer who is living with myelofibrosis. Jeff admits to doing majority of the research so he can properly advocate for Summer’s care. In this video, Jeff talks about various outlets he uses to counteract burnout such as photography, music and improv theater.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

 


Transcript

Summer:

Wake up. I’ve finished making your bonbons, Jeff. You said you wanted these.

Jeff:

Thank you, Summer. Mmm.

Summer:

Is it delicious?

Jeff:

It’s delicious. Just what I needed.

Summer:

Well, I’m glad I could please you.

Jeff:

Well, I’m Jeff.

Summer:

I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. We’re here to talk to you today about…

Summer:

What caregivers do, and sometimes caregivers might get burned out. So, we’re talking about what you can do periodically to not get burned out, to keep going, and being great like you are. What are some of the main things you do, Jeff?

Jeff:

Well, I…one of the main things I do is try to remove myself from worrying about myelofibrosis and Summer’s disease. And I go out into nature and I take a lot of nature pictures. I go to National Parks, and take pictures of scenery, beautiful scenery, and big mammals and stuff, which I really really enjoy doing. It sort of clears my head and really refreshes me. I recently took a trip, as a matter of fact, to Yosemite. That’s one of the things I do.

Summer:

And another thing has to do with music.

Jeff:

Yes, I love music and I play in a band. I play the keyboard and the guitar, and I do that once a week at my church and I really really…again it requires quite a bit of focus and it puts my mind in a completely different place. So I remove myself from the worries, is one of the things I do. I’m very fortunate because Summer is doing quite well and doesn’t need huge amounts of physical care.

Summer:

Right, but you do all of the medical stuff because I can’t stand to hear about medical stuff, it’s boring.

Jeff:

That’s right. I do do a lot of the research and keep up with what’s going on in the myelofibrosis area and that’s kind of what my portion of the caregiving is. We’ve talked before about working with, dealing with these disease requires a team approach: the patient, the caregiver, and the medical team.

Summer:

Right.

Jeff:

It’s very important.

Summer:

And we also do improv. That really helps.

Jeff:

That’s correct. We’ve mentioned before that we run a small theater, and one of the things we do in the theater is improvisational theater. We make things up, now you’ve got to be in the moment, so your head can’t be disclouded and worrying about other things. It takes your mind off of the disease, and in my case, worrying about Summer’s disease and the caregiving responsibilities. So that helps us. It actually helps both of us a lot.

Summer:

Right. So do you want any more bonbons or is that a no?

Jeff:

I’ll just take another bite. You know, if we keep going like this, you could become the caregiver and I’ll be the patient. So until next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye!

Summer:

Bye!

Care Partner Profile: Mike Crocker

The first time Mike Crocker became a care partner was in 2016 when his wife Dr. Gerri Smoluk was diagnosed with Acute Myeloid Leukemia (AML). The second time was in 2020 when, after being in remission for four years, Gerri was diagnosed with leukemia again. The two experiences couldn’t have been more different, says Mike.

Gerri’s first diagnosis came shortly after she started a new job. Gerri, who had a PhD in biochemistry, worked in the pharmaceutical industry. She was feeling tired a lot, but she was brushing it off, blaming it on the stress that comes with a new job. However, Mike urged her to see a doctor, so Gerri had a coworker, who was also a doctor, check her out. The coworker sent Gerri directly to the emergency room. She was admitted and was in the hospital for 45 days undergoing chemotherapy. “She had a very severe case,” says Mike.

It was overwhelming to say the least, but Mike quickly took on the role of caregiver. He soon realized that the simple things were the most helpful. Mike made sure to bring Gerri some of the comforts of home. He made sure she had t-shirts and sweatshirts to wear instead of hospital gowns. He brought Gerri her laptop and yarn for crocheting. He brought her the few foods that she could actually taste after the chemo wiped out her taste buds. Mike was also her sounding board. He listened as she talked through her care options and how they would affect her quality of life. He was simply there for her, walking with her daily so she could get some exercise and maintain circulation, so she didn’t have to stay in bed with the compression sleeves on her legs. “I did all the little things that could help her be a little more in control and have as close to a normal day as possible,” says Mike adding that Gerri’s background in biochemistry and the pharmaceutical industry gave her unique insight into her care. “She started charting her tests and data so she could be a part of the solution and have informed discussions with doctors. She wanted details and wanted to know what to expect.”

Mike and Gerri learned that patients and care partners are given overwhelming amounts of information and that they have the responsibility of learning all they can and asking questions and making decisions. He says that doctors aren’t always keeping up with the latest research and that it is easy for them to get stuck in routine treatments. He found that doctors talk about options based on their experience and their skill set, but that doesn’t mean that approach is best for the patient. He says that being comfortable with the doctor and getting a second opinion if wanted are also important. He and Gerri learned to be active participants in her treatment and care.

In addition, Mike and Gerri were always looking ahead and focusing on the future. He concentrated on keeping her spirits up. When she was bald from chemo Gerri was looking at wigs and Mike says he encouraged her to go wild and get a bright red wig. “She didn’t go for it but being outrageous and adding humor to the moment was a way for me to help,” he says.

It was while she was in her fourth year of remission that Gerri found Patient Empowerment Network (PEN). “Gerri liked PEN’s focus on making the information understandable for patients, giving them easy-to-digest information to make decisions,” says Mike. Gerri jumped right in and helped to develop the Network Manager program which launched in March 2020. The program is made up of volunteers around the country who use their own patient experience to support patients and their care partners through their own cancer journey and on to a path to empowerment. “PEN is very important because it is patient-focused,” Mike says, and that’s why PEN appealed to Gerri. She liked that she could use her scientific background to help patients understand the information and to make sensible decisions for themselves. Gerri served as the AML Network Manager and was named a finalist for the 2020 Reuters Patient Champion Award in the Patient Advocate category.

Then in July 2020, Gerri got her second diagnosis. She celebrated her birthday July 7 and a week later, Gerri was back in the hospital. “This time she had a second type of leukemia which threw doctors for a loop,” says Mike. “Usually when leukemia patients relapse, it’s with the same type of leukemia.”

Although they had been through a leukemia diagnosis before, this experience was nothing like the first. “It was very different. It was during covid so of course, unlike before, when she could have friends drop in, she no longer could have visitors. Everything was more restrictive with covid,” says Mike. “At least I could be there every day.”

This time, Gerri and Mike were not expecting a longer hospital stay. They were expecting outpatient treatment that would be easier, and they were looking forward to time away from the hospital. The first time was so scary, but this time they were experienced, and they knew what to expect, but what they expected is not what happened.

After about a week Gerri got worse. Doctors were trying to figure out what was wrong, but they were unable to save her. Gerri died July 27, 2020. The autopsy revealed she had an antibiotic resistant bacterial infection.

More than a year later, Mike says he’s doing okay. “Everyone handles it differently,” he says. “You have to give yourself permission to not be happy and also give yourself permission to keep going and find other things to fill the hole.” In September 2021, he retired from his career as a web project manager, and recently he reached out to PEN looking for a way to use his skills to help others. “Gerri was the driver, so now I’ve been drifting,” he says. “That’s why I contacted PEN. I wanted to do something of value.”

Mike will be an invaluable addition to the PEN network of volunteers.

Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving? from Patient Empowerment Network on Vimeo.

 What should prostate cancer patients, care partners, and underserved patients know about? Watch as expert Dr. Yaw Nyamefrom the University of Washington shares insight about prostate cancer detection, screening guidelines, specific concerns for Black men, support groups, and clinical trials to work toward better health outcomes for all. 

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

How Has the Onset of Prostate Cancer Evolved?


Transcript:

Sherea Cary: 

Hello, we are here with Dr. Nyame. I have a few questions for you. Dr. Nyame, how has prostate cancer evolved over the last decade regarding the onset of the disease, the population in which it impacts the care and the treatment? 

Dr. Nyame: 

You know, prostate cancer is the most common cancer in men that is in a solid organ. It affects about one in nine men over their lifetime, and probably the biggest advance or change we’ve seen in the disease occurred in the late ‘80s with the introduction of the PSA test. What that allows us to do is detect cancers very early in their natural life history, if you will, and that gives us the opportunity really to provide treatment when there’s…with an opportunity for cure. The downside to that is not all prostate cancers are the same, we know that some prostate cancers are diseases that men will die with and not from…meaning that some of these cancers that we detect don’t need any treatment or intervention. This means that a lot of research that has occurred in the last decade or two has been focused on helping us determine which cancers deserve treatment and which ones we can watch safely and so some of the biggest advances have been diagnostic tests such as radiology imaging, so we’ve seen things like MRI really come into the mainstay of prostate cancer diagnosis and treatment upfront. We have very exciting nuclear medicine scans. 

So, you might hear the term PSM-A as a new test that’s really going to disrupt and change the way the prostate cancer diagnosis and treatment is made. We also have genetic testing that we can do on blood samples, urine samples, and tissue, that might give us some very exciting information about one’s risk of dying from prostate cancer, which ultimately is what we want to know when we’re offering treatment to someone.  

Sherea Cary: 

Thank you. What screening test or risk-reducing care would you suggest for men who have a family history of prostate cancer, and at what age should screening begin for specific populations?  

Dr. Nyame: 

Unfortunately, there is no data, rigorous data to help answer this question, but we know that men that have a high risk of developing prostate cancer benefit from earlier testing with PSA. We know this from a variety of studies, including some modeling studies, which we have done here at the Fred Hutch Cancer Center at the University of Washington. When I talk about high-risk groups, it really falls into two categories, men who have a strong family history and a strong family history means a first-degree relative, father, brother, grandfather that has prostate cancer. 

But when we look at the genetics of prostate cancer it’s not just about prostate cancer itself, what we have found is that things that lead to family histories of breast cancer, ovarian cancer, colon cancer also increase your risk of prostate cancer, for instance, the BRCA gene, which is a breast cancer gene is associated with a marked increased risk of prostate cancer. So, knowing your family history matters and knowing it beyond prostate cancer is important. The other high-risk group as men of African descent or ancestry, we know our black men have a much higher risk of developing prostate cancer in their lifetime, it’s about a one in six or one in seven risk compared to one in nine in the general population. So, the recommendation I make for these two groups is to consider screening earlier and to do it more frequently. On average, PSA screening happens for men between the ages of 55 and 70 or 74, and it’s usually every two years, if you look at the population level data, I would suggest that you consider screening at age 45 or 40 and doing it every year, however, you’ve got to turn the screening off at some point. So, if your PSA stays low and is non-concerning into your early 70s, then I think you can be reassured that your risk of having a fatal or aggressive cancer is low, and you could safely stop screening. 

 Sherea Cary:

Thank you. So, for someone who has a first degree relative such as a father who had prostate cancer and maybe even an aggressive form of prostate cancer, it will be important for them to get screened at 40 to start at least having a baseline number to be able to watch it? 

Dr. Nyame: 

Absolutely. The baseline number is really a topic of discussion in the urologic community because we know that if you get a PSA at age 40 and its above one or above the median for your age group, that you’re a lifetime risk of having what we call significant cancer, so that’s a cancer that might have the potential to be fatal in your lifetime is higher, and so theoretically, you could get that one-time PSA at 40 and use that as a basis for how intense your screening practice would be. I’ve talked about PSA testing, but screening also involves the digital rectal exam, and it’s important that men understand that both those things together is what leads to a thorough and good clinical evaluation, when it comes to prostate cancer risk. 

Sherea Cary:

Thank you so much for sharing the information about the BRCA gene as well. I’ve heard information about the BRCA gene, but I always hear it in relation to women, I’ve never heard it in relation to a connection with prostate cancer. 

That is very interesting to know. What does a multi-discipline approach to prostate cancer look like? 

Dr. Nyame:

Well, when you think about prostate cancer and how it’s diagnosed and how it’s treated, you’re talking about a process that involves a team, the process often starts with your primary care physician, he or she may order a PSA test, which will prompt a biopsy if it’s positive, so that’s the step one is that relationship you have with your primary care physician. Step two is going to be your urologist, that’s the person that’s going to do your biopsy, and if you are diagnosed with prostate cancer that person in conjunction with your primary care physician is then going to be leading this process of, do we actively watch your cancer because it’s a low risk, or do we seek treatment because it’s localized, meaning it’s in the prostate and we can still get your treatment with curative intent as we call it, or has it spread? And in that case, your options for a doctor is different on the watch side, you’re probably looking at a urologist who’s watching closely, on the localized side, you’re going to talk to maybe a radiation specialist or a urologist because both treatments are equal and their effectiveness from cancer treatment. 

But they have different side effects. And I think to get good information about what treatment is best for you, you should see both, and then on the advanced side, you’re talking about medical oncologist that’s going to help navigate all of the various treatments that we have now for stage IV prostate cancer, and even in that setting, you might still find yourself considering a clinical trial with someone like a urologist or getting radiation treatment, which can be standard of care in select patients that have stage IV cancer. So as you can see, it is a very wide range of individuals that are helping take care of your cancer, and that’s just on the treatment side, that’s not talking about any of the other supportive services that you may need that may exist either in your community or in your health systems where you’re getting treated, and those can include patient navigators, social workers, the various nursing services, nutritionists, there’s a lot of people that you may want to put on your team as you’re considering your care. 

Sherea Cary: 

Thank you. So, some people may consider prostate cancer a couples’ disease. What advice would you give to a care partner? My father was a prostate cancer survivor, my mother was very supportive of him, but I took much of the lead as far as being his caregiver and coordinating things between my father, his doctor’s appointments, and with my siblings. 

Do you believe that support people, caregivers, such as children, are able to also assist in receiving care? 

Dr. Nyame: 

Absolutely. The data is overwhelming in this scenario, patients who are partnered or have strong social support do better, and I always say that the patients who have the best outcomes when it comes to cancer, have someone like you, Sherea in their life. It’s not surprising, given the burden of cancer treatment, that having someone that can help navigate all the aspects of your care and be there to support you leads to better outcomes and better satisfaction with the treatments that you choose, a cancer diagnosis, especially prostate cancer diagnosis, a disease that has a very high cure rate, has a very long lifespan, but has really life-altering potential consequences of the treatments you received, has an impact on what we return your survivorship. So how do you live with your cancer, and so the individuals that are there to support you through that journey are absolutely critical. 

Sherea Cary: 

Thank you. What differences do you see in terms of aggressiveness for cancers in different… Various populations?  

Dr. Nyame: 

This is an area of research that for me, is trying to understand why certain populations have more aggressive or worse outcomes when it comes to prostate cancer. 

The most obvious example of this here in the United States is for black men. Black men are more likely to be diagnosed with prostate cancer each year, so about 70% more likely to be diagnosed and they are twice as likely to die from prostate cancer as men of other races in the United States. If you look at what the natural history of prostate cancer and Black men looks like, meaning if you were to chart from diagnosis through the course of the disease, does it look different for black men? The answer is yes,, it appears of Black men get prostate cancer when they’re younger, and there’s data to suggest that perhaps Black men get more aggressive prostate cancer because they’re more likely to progress from the localized or treatable disease to stage IV aggressive disease that can’t be treated. We don’t understand what the drivers of that are for a long time, the medical community has suggested that it’s all biology, and by that may be an inherited biology, but we know that health disparities really carry a significant social contribution, and in fact, I like to say that social and environmental factors inform biology too, and so if we see something biologic that explains these trends, it doesn’t mean that that’s the way they were born, it might mean that you put someone in a community that lives near a highway with high pollution or does not have access to clean water or lives in a state of high stress or over security, we don’t know what the biologic manifestations of those types of experiences are, but that perhaps is the reason why we see our communities of color, especially our Black men, experiencing a higher burden of prostate cancer. 

Sherea Cary:

So, is there a push to have African-American men tested earlier with the PSA test, since it appears that they may get prostate cancer earlier?  

Dr. Nyame: 

The U.S. Preventative Services Task Force, which makes a recommendation to the medical community about prostate cancer screening states that they cannot make a specific recommendation about screening in black men and other high-risk populations like men with a strong family history of prostate cancer, because those men were not included in the clinical trials that have looked at the efficacy of PSA testing for screening. 

Unfortunately, black men make up 3 percent or less of participants in the two screening trials that have informed whether there’s a benefit to PSA testing, which there has been shown to be a 20 percent decrease in dying from prostate cancer if you get screened. We recently took data from the screening trials and superimposed them on real-world data from our surveillance apparatus for cancer in the United States, and what we found was that if you did lower the age of screening in Black men from age 55 to 45, that you did decrease the risk of dying from prostate cancer significantly. It is our hope that this type of research will encourage the U.S. Preventative Services Task Force and other medical societies to reconsider their screening recommendation for black men, ultimately, whatever, if there is a recommendation made to screen at younger ages, I think we need to be conscientious and evaluate what the impact is on the ground, so that if there is a time where we need to reverse a recommendation like that because it’s potentially harmful, that we consider that, but I feel strongly sitting here today that we do need to advocate for earlier screening and Black men. 

Sherea Cary:

What advice do you have for prostate cancer patients about locating a clinical trial. Where can you find one? 

Dr. Nyame: 

Clinical trials tend to happen at the big cancer centers and the big academic university centers, although many of those programs will have affiliate partners out in the community. The easiest way to learn about clinical trials is to start by asking the physician that’s treating you for your prostate cancer, oftentimes, they’ll have resources and connections to the trials directly or are the people who are administering them; however, other great sources are going to be patient advocacy networks, and there are many of them for prostate cancer, there’s one… There are several, I’ll start naming a few. They have the Prostate Cancer Foundation, you have Us TOO, you have zero cancer, you have a PHEN, Prostate Health Education Network, which is an advocacy group for black men with prostate cancer. So these are all great sources of finding out what clinical trials exist, and in addition, you can just get on the Internet and Google if that’s something you have access to, the trick is navigating all the information, and I think knowing what trials are available for you, whether you qualify, that kind of thing can be difficult, and that’s ultimately where finding a provider, whether it’s your direct urologists or radiation oncologist or whoever is helping treat your prostate cancer, either them directly or sometimes seeking a second opinion, and going to a place where you might find someone who has some expertise in trials, if that’s something that you’re interested in.  

Sherea Cary: 

My father participated in a clinical trial, it was going on, I think the time of his treatment, and it was offered to us, and he was at a big facility here in Houston that offered…ask him if he wanted to participate. We did a lot of research. We said we’d try it. And we were glad to be able to participate. I participated in clinical trials also for different health conditions, ’cause I believe it’s important that we have to participate in order for our people to gather the information that’s necessary. So thank you for that. 

Dr. Nyame: 

Absolutely, you know I think there are a lot of reasons that we think that our black community, for instance, may not participate in a clinical trial given the history of medical experimentation and various forms of abuse that have existed in our history, but what I recently heard from our partner of our community partners at PHEN, when they surveyed black men about prosecutor clinical trials, was that although there was some concern about trust in the history, that the overwhelming majority of the men wanted to participate, but they never were asked, and that’s really stuck with me, and I think that black men are under-represented in clinical trials, and we have to find ways to be more inclusive and understand what barriers might exist into participation so that we can have that data to care better for the population. 

Sherea Cary: 

Thank you so much for spending time with us today. I appreciate you sharing your knowledge. 

Essential First Aid Tips For Cancer Caregivers

First aid is an essential skill — however, 70% of Americans feel unprepared for a cardiac emergency because they either don’t know how to administer CPR or their training has significantly lapsed. It’s important for caregivers of cancer patients to be trained in first aid, so they’re fully-prepared and ready to act in emergency situations. This includes knowing how to administer CPR, looking out for the common signs of infection, and helping patients manage the emotional symptoms of cancer.

Administering CPR

Chemotherapy damages healthy cells in the body, including cells in and near the heart. As a result, cardiac toxicity and conditions like arrhythmias (abnormal heart rhythms), congestive heart failure, cardiomyopathy (the heart struggling to send blood around the body), angina (chest pain), and myocarditis (inflammation of the muscular layer of the heart wall) can occur. In these situations, a cancer patient may need CPR, which, if unsuccessful, may need to be followed up with an AED (automated external defibrillator). An AED can help restart the patient’s heart and re-establish the natural rhythm of the heartbeat. First aid training is essential for anyone caring for cancer patients as it covers how to administer CPR correctly. Caregivers should also inform themselves of the patient’s resuscitation wishes in advance.

Preventing infection

Cancer and cancer treatment weakens the immune system, which in turn increases a patient’s risk of infection. Additionally, cancer patients can have a low white blood cell count (neutropenia), which further weakens the body’s ability to fight infection. Symptoms of infection to look out for in cancer patients can include: fever, sore throat, shortness of breath, belly pain, and chills potentially followed by sweating. In this case, caregivers should check the patient’s temperature with a thermometer, keep the patient hydrated, and help them take their medication on schedule. If the patient has a high or low temperature, can’t take fluids, or simply doesn’t seem “right,” take them to the emergency room and let the staff know they’re in treatment for cancer.

Emotional first aid

One third of all cancer patients experience high levels of mental or emotional distress that meets the strict diagnostic criteria for mental disorders, including depression or anxiety. As such, emotional first aid becomes an important part of caring for cancer patients and their emotional health. In particular, anxiety can result in shortness of breath, hyperventilation, and chest pain. It’s therefore essential to learn deep breathing techniques to help affected patients stay as calm and pain-free as possible. Alternatively, depression can manifest symptoms like low mood, irritability, insomnia, excess sleepiness, and suicidal thoughts. Be sure to familiarize yourself with the signs and symptoms of depression and begin an open dialogue with the affected individual to provide them with support and treatment if necessary.

First aid knowledge and skills are an essential part of caring for people with cancer. It’s important caregivers have the right first aid training, knowledge, and skills to help patients in emergency situations.

The Nitty Gritty on Care Partnering

For those of us who are sometimes patients, and at other times care partners, it can be useful to have a checklist to make helping a friend or family member navigate cancer treatment, or treatment for any other medical condition.

Here’s a short list that can be used in any patient-with-a-bedside-care-partner situation. If you have any ideas for things that would be good to add, hit me up via @MightyCasey, or shout out to @Power4Patients, on Twitter.

Here we go.

  • Make sure you – the care partner – have been named in your patient buddy’s Advance Directive as the person who can speak for your friend when they can’t speak for themselves due to intubation, anesthesia, or loss of consciousness. Here’s a handy link with downloadable forms to create an Advance Directive in all 50 US states.
  • Since you’ll be speaking for your friend in situations where they can’t speak for themselves, it’s critical that you know what their wishes are in scenarios from “coming out of anesthesia” to possible life support situations. What are your friend’s wishes? These are sometimes tough conversations, since facing mortality isn’t something humans are naturally wired to do. Two tools that can help you and your friend figure out the what-ifs for their wishes are Engage With Grace and The Conversation Project. Pick one, get started.
  • Do you have access to your buddy’s patient portal? Most EHR software platforms have “share” utilities where you can share your record with a care partner. Get that organized early in the care partnering process, so you can be able to answer questions about medications and patient history when your friend can’t speak for themselves.
  • Speaking of medication lists, make one. It can be as simple as a notes file on your phone, or a printed sheet that you can refer to, and copy, for anyone who needs it. Update it as/if medications are added to your friend’s list. Make sure you have dosages and timing for all of them on that sheet or in that note file, too.
  • Is surgery involved in the treatment plan? If so, make sure you and your buddy keep a calendar of pre-op testing requirements – blood work, scans, and so forth. A shared Google calendar can be a great tool here, or you could go old-school and just use a wall calendar with large blocks to write on each day.
  • Will you need durable medical equipment (DME) during the treatment and recovery process? DME is stuff like wheelchairs, walkers, knee scooters, woundVAC systems. You can either buy or rent this gear. Pro tip: Amazon and Walmart pricing on this stuff is much less than from a traditional medical supply house.
  • On that supplies front, there might also be what are called “expendables” required: bandages, wound wraps, bandage tape, wound packing material, and so forth. Another pro tip: if you need to buy this stuff, Amazon is the medical supply house with all the best deals. What costs you $40 at the local drugstore will cost you $8-10 or less on Amazon.
  • Will home health care be part of your friend’s recovery? Working with the Nurse Care Manager at the hospital or health system where your buddy’s getting care, get a list of reputable home health agencies in your geographic area, and interview them. Asking questions about how they coordinate care across nursing, occupational therapy (OT) and physical therapy (PT) sessions. Recent personal experience here is that a home care agency that has a system in place for “who’s on next” and “when are they coming” that’s left in the patient’s home, useable by them (the patient) and the home care crew is who you want to hire.

Care partnering with someone isn’t something to be taken lightly – if a friend asks you to do it for them, it’s a mark of how much they trust you. If you’re someone facing a Big Medical Adventure, figure out who you trust enough to walk with you through that adventure, making decisions that align with your wishes when you can’t speak for yourself. It’s one of the most human acts of kindness you can perform, care partnering.

The Importance of Caregivers

In honor of November being National Family Caregivers Month, we wanted to highlight the importance of family caregivers. A family caregiver is a person who provides any type of physical and/or emotional care for an ill or disabled loved one at home. Loved ones in need of care include those suffering from a physical or mental illness, disability, substance misuse or other condition. In most cases, the primary caregiver is a spouse, partner, parent or adult child. Caregivers often take on the responsibilities of the patient while still providing for themselves and other family members. Some important tasks and roles of a caregiver are:

Advocate. Sometimes patients are not completely forthcoming with their physical or emotional needs and tend to downplay their pain when speaking with doctors. Caretakers play an important role in honest communication between doctors and patients by upholding patient preferences for treatment options when the patient cannot or will not speak for him or herself.

Personal Care. Caregivers may help with daily activities such as dressing, bathing, toileting, or arranging child care.

Household Tasks. Caregivers are often in charge of preparing meals, doing chores or laundry, shopping for groceries or paying bills.

Emotional Support. When faced with a serious diagnosis, patients are often overwhelmed by the emotional and physical turmoil. Caregivers are tasked with the important duty of providing support and encouragement for the patients as well as themselves. Communication is key in the relationship between a caregiver and a patient. It is important to both openly share feelings and remain empathetic to the situation.

Medical Care. Caregivers must be present, take notes, ask questions and assist loved ones in making decisions with the care team. They may also be responsible for administering, ordering, and picking up medication, providing transportation to appointments, and dealing with scheduling, billing, or insurance issues. Caregivers may also assist with other medical processes such as physical therapy, injections, feeding tubes, etc.

There are close to 65 million caregivers in this country alone. The estimated monetary value of family caregivers’ unpaid contributions was estimated $450 billion in 2009, though the true value of caregivers far exceeds any monetary worth. In honor of National Family Caregivers Month, we would like to thank all of those who aid in the care of those in need.

Resources for Caregivers: National Alliance for Caregiving


References:

http://www.netofcare.org/content/getting_started/

http://www.cancer.org/treatment/caregivers/copingasacaregiver/if-youre-about-to-become-a-cancer-caregiver

8 Beliefs That Can Hold Caregivers Back (from reaching out for help)

Family caregivers too often suffer from two very common things: overwhelm and isolation. Or, to it put another way, exhaustion and loneliness. So often, the nature of illness and trauma not only disrupts our normal ways of living, but also disrupts our connections with people who care about us. Caregivers who reach out for support gain the benefits of lessening their burdens and of feeling the warmth provided by people who care.

Too often, caregivers hold back from reaching out because of beliefs they have about doing so:

  •  Nobody else can do what I do for my loved one.
  •  My loved one won’t accept help from anyone but me.
  •  I’m too busy to even begin to think about doing anything more – even reaching out.
  •  The moment I start reaching out, our family will lose our privacy.
  •  I’m afraid of imposing on people.
  •  Reaching out shows weakness; doing it yourself shows strength.
  •  I’m afraid that nobody will come forward to help me.
  •  Since I’m able to handle things now, I’ll be able to continue to do so.

These, beliefs, while completely understandable and very common, are neither healthy for you as a caregiver or for your loved one. They get in the way of your resilience and your capacity to sustain yourself for however long your caregiving is required. Each week, I will be focusing in on one of these self-limiting beliefs and invite you to come along with me in exploring those that you are now willing to let go of and change into ones that help you not only survive, but thrive.

So let’s get started:

Nobody else can do what I do for my loved one

Think of the whole range of “things” you are currently doing. First think of the practical ones: dressing, managing and administering the meds, shopping, preparing, serving and cleaning up after meals, assisting with bathing and toileting, and so on. Now focus on the emotional and spiritual ones – showing love, being a trusted confidant, giving emotional support and comfort, etc.

Nobody else can do these things exactly how you’re doing them or would your loved one experience them in the same way if they were done by people other than you. No one else is so attuned to your loved one’s needs and preferences and, most likely, your loved one is most receptive to your way of doing these things. And, no one else would be as committed to your loved one’s comfort and be as vigilant as you are. This much is true.

But, the trap here is believing that, since no one else can do things the way you do, that no one else can do them or do them satisfactorily for you and your loved one.

Let’s take a look at some of those practical things that I listed above. Take one area for starters, e.g. grocery shopping. These days, it’s not like the days when our mothers used to look the butcher in the eye and tell him she wants a better cut of meat than the way he did it last week. Shopping simply means meal planning, list making and going out and getting the groceries – all very delegatable tasks. When you think about, I think you’ll agree that many if not most of the practical things can be done by others. Not necessarily with your intimate knowledge and way of doing things, but in their own ways. And, similarly, other people will bring their own and distinctly different ways of providing emotional and spiritual support as well.

Bottom line: Is this a belief you’ve been holding? If so, how does it serve you? How does it hinder you? How might you re-write that belief so that it serves you better? For example, “There are some things that other people can help with. I’m going to try this out with some simple things.” What practical step can you take to try out that new belief this very week? Let us know – by commenting on this blog. You’ll help yourself and other caregivers by doing so.