Category: palliative care

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cancer management palliative care Stage 4 cancer

STAGE 4 CANCER: RETHINKING OUR SUPPORT SYSTEMS

Four years ago, my friend got a frightening taste of death when her breast cancer metastasized, spreading into other organs. Her prognosis was not sunny, but somehow, she managed to endure some grueling treatments and survive them. When some doctors suggested that she prepare for the worst, she pushed back. She still had so many things to accomplish and she wasn’t ready to give up the fight.

When I look at where she is today, I am amazed. Her cancer has been in check now for quite some time, although she requires regular chemotherapy treatments to stay that way. But the important thing is that she is still here. Why? She is caregiver for her elderly parents, who have had serious challenges over the last year or so. If she weren’t here, what would have happened to them? Who would have looked after them in their time of need?

But her goals, her raison d’être, are far more ambitious than that. She is not just a caring and compassionate daughter. She also has guided young lawyers toward success, enabling them to pass the California bar. When her doctors informed her that it was time to retire, she balked, insisting on keeping her career intact, even as she scaled back her workload. It seemed like every time she was on the brink of success, cancer knocked her back on her fanny.

One of the early casualties of this unpleasant reality was her music. If you cannot hold your instrument, it’s hard to be a musician. Neuropathy, muscle weakness, mobility issues, and mind-numbing pain all took their toll on her. When she recently recorded her version of Santa Baby, we were so thrilled, not just because she stepped up to the microphone, but because she took that song and made it her own. She was getting back into the limelight, where she belongs.

The truth is that my friend doesn’t fit the mold of what has long been held to be the vision of a Stage 4 cancer patient. She has so many struggles, but she also has so many successes.

Stage 4 cancer patients often straddle the divide between life and death. As their disease is managed over years, not months, and as treatments have improved, these survivors are in perpetual limbo. Why does that matter?

It’s hard to keep a job when you have persistent, yet treatable long-term health challenges. If my friend had followed her doctors’ advice four years ago, her income would have been wiped out and she would be completely dependent on disability payments. Her teaching opportunities would have dried up. She would have had little hope of restarting her career.

This is often a typical experience for Stage 4 patients like the banker I met long ago. He bemoaned the fact that he was forced to give up his position in a financial institution because of his disease because he wasn’t expected to survive it. Four years later, with his stomach cancer managed, he floundered, trying to restart his career. He still had much he hoped to accomplish in the world of finance, yet he was on the outside, looking in, all because the expectation was that he was dying.

We need to start the conversation about how we can empower those Stage 4 survivors who choose to remain active and engaged in their chosen fields, should they feel up to working.

Pain management and palliative care are also crucial for any patient with Stage 4 cancer. There are almost always side effects and complications which can dramatically impact a patient’s ability to get over the obstacles that stand in the way between the “new normal” and everyday life. The better the disease management, the greater the success in navigating said obstacles. It’s important that we understand just how powerful it is when we help these patients find the “work-arounds” that hold them back. Overcoming the challenges of immobility and finding physical adaptations are imperative. How do we help people who are sometimes able and sometimes not able? There are times my friend can walk and times she can’t. There are times my friend can drive and times she can’t. She is able-bodied and yet disabled. That’s because she resides now in two different worlds, and she’s never really sure which one of them she’s in until she runs head-first into trouble.

What kind of accommodations should we make for people whose health fluctuates? We can’t just tell these people to surrender to their disease because they bear the label of Stage 4 cancer. We can’t expect them to give up the things that matter most to them. Nor can we dictate to them what they should or should not do. The doctors who insisted that my friend retire didn’t understand just how important her work is to her. For as long as she can remain engaged in her career, focusing on goals and continuing to advance her agenda, she chooses to do this. It helps her to have a purpose in life. It helps her to feel like she’s still a contributor whether she guides students, cares for her parents, or continues to pursue her beloved music. And to be honest, the world genuinely is a better place because she is still with us. So, who are we to stop her from pursuing her dreams? So many lives have been lost through the years, so many good people whose battles asked too much of them. That’s why we often think of my friend as a walking miracle. She has beaten the odds thus far, and she has put that “extra” time on this earth to good use. But she, just like other Stage 4 cancer survivors, needs more than just cheerful words and prayers.

There will come a time when more and more people survive the disease, and when that happens, we will have to help them maneuver back and forth between the world of active disease treatment and remission, without shutting them out of, or off from, what makes life worth living.

Is it a drain on healthcare to have people survive their disease? Yes and no. For every patient who adapts to the challenges, doctors learn more about what works and what doesn’t work. They find what is cost-effective and what wastes valuable time, money, energy, and resources. Some chemotherapy treatments have turned out to cause more damage than good. Some of the newer options that empower the immune system to fight the disease are showing promise. As these survivors begin to move away from a terminal prognosis, they need a better transition to more effective support systems.

How can we provide personal assistance, services, treatments, career options, and insurance coverage that works for them? Obviously, we know that what works for some doesn’t work for others. Can we find new ways to be mindful of their needs and responsive to their ever-changing physicality? Maybe what we really need is for Stage 4 patients to educate us about what they really need. While they are able, we should help them to flourish. And while they are disabled, we should work to empower them in ways that show that we recognize and respect that their lives are in limbo. We should strive to be that “bridge over troubled water” that Simon and Garfunkel sang about so eloquently, not just because we feel sorry for Stage 4 survivors, but because we understand just how valuable their lives really are, and we remain grateful that they are with us still.

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ALS Alzheimer's cancer COPD heart disease palliative care Parkinson's serious illness

What the Heck Is Palliative Care?

For a lot of people with serious illness, palliative care is a life-saver. Find out why:

 
 
 
 
 
 
For more help as a caregiver, visit www.practicalcaregiverguides.com
 
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#BCSM advanced breast cancer Alicia Staley caregiver Dr. Deanna J. Attai elderly Jody Schoger palliative care

Advice Columnist Puts Breast Cancer Patient at Risk with Bad Advice

Problem: A 75-year-old friend has experienced a serious health decline. The elderly woman is battling breast cancer. Reader contacts nationally acclaimed advice columnist, worried that the friend has dementia.

Symptoms: The patient forgets to eat, which leads her to lose consciousness in public. She has been hospitalized for malnutrition and dehydration. She is forgetful and repetitive in her conversations and written communications. She appears to be increasingly frail and unkempt.

Patient’s support system: Never married and without children, she has one sibling, who is aware of her decline and wants her to move to a “retirement community”. Other possible support comes from the reader and associates at the company that formerly employed the elderly woman. They want to suggest that she hires home care help while she considers a “retirement home”.

Advice columnist’s view: Talk to the friend (who is having communication issues and may not comprehend). Do some research through the local office on aging and present the patient with options that will allow her to remain at home (assuming the dementia diagnosis is accurate). Try to visit frequently. Do things with the elderly friend. And if things are dire, contact the sibling (presumably to intercede).

On the surface, it all sounds like a good working plan, except for one thing. The 75-year-old woman is battling breast cancer.

In the past year, I’ve lost two family members to cancer. I’ve also been there for two cancer surgeries for another relative. And, sadly, I had a beloved relative who had advanced breast cancer that was never diagnosed, despite multiple visits to her physician and complaints. When that breast cancer spread to her bones, every bit of her body ached and she suffered enormously. She could have been helped by proper cancer care, but because she was elderly, she was treated for age-related issues. That is a lesson I will never forget, because the people who loved her were unable to help her. When the aches and pains an elderly person experiences are chalked up to arthritis, dementia, or any other age-related issue, that patient will not receive the appropriate treatment. There will be no palliative care for the pain, no treatment for bone mets, and no help with issues such as nutrition and hydration.

So, what did I do when I read the advice from the nationally recognized advice columnist? I contacted her, pointing out the very real possibility that the problems the elderly woman was experiencing were actually the result of the breast cancer. It might have invaded her brain. That’s not an unusual thing with breast cancer, is it?

There is also the very real possibility that the decline in mental function was the result of powerful chemotherapy drugs and/or other treatments. Many breast cancer patients are familiar with the annoying and debilitating effects of “chemo brain.”

Anyone familiar with cancer patients and the challenges they experience knows that the malnutrition and dehydration issues raised by the reader can be symptomatic of the breast cancer. That’s why many cancer centers have nutritionists that work with families to assist in providing nutrition to the patient that is tolerable under the circumstances.

And let us not fail to consider that this 75-year-old breast cancer patient could be depressed with her circumstances. Having breast cancer can bring the strongest of us to our knees. I have a number of friends who are breast cancer survivors, married and single. They have shared their insights in ways that are now permanently etched on my mind and in my heart. Having breast cancer can be a very lonely, isolating experience. Good support is critical in surviving the brutalities of the disease.

The response to me from this nationally acclaimed advice columnist was less than stellar. She was offended. She took umbrage at my response to her advice. She tossed in a tiny little, “could be the cancer”, which was apparently meant to make her appear to be flexible on the subject. But she stuck to her guns that her advice was appropriate. It wasn’t. Why?

By sloughing off the 75-year-old woman off as being elderly, she had actually provided harmful, not helpful, advice (which raises the question of liability should the 75-year-old breast cancer patient be involuntarily hospitalized for dementia if the cancer is causing the problems). She allowed the “dementia” label to stand. She didn’t correct the reader or open the possibility of some simple ways to help the cancer patient.

What would be MY advice? First and foremost, if a woman is battling breast cancer, recognize that’s a medical diagnosis. That means somewhere, at sometime, an oncologist has treated the disease. We also know the patient has been treated for malnutrition and dehydration in a hospital. Is she still being treated or did treatment end? A scan could reveal a brain tumor pressing on the part of the brain that involves executive decision-making, for example. That’s not a matter of guessing that the patient has dementia. That’s a medical opinion backed up by scientific testing. Has that been done?

Hospitals and medical centers who treat cancer patients normally have cancer navigators, patient advocates, social workers, and a myriad of other support services that can assist a 75-year-old woman who lives alone, but has people to care about her. There is no need to go to the local office on aging for advice on anything.

But there’s a glitch, a very big one. HIPAA laws prevent unauthorized people from getting information on a patient’s situation, and rightly so. Obviously, the reader and her associates can’t call the medical center to find out how they can help. The 75-year-old breast cancer patient’s sibling might be able to do so, however. Normally, if someone is that debilitated by illness, a relative is essential in helping to navigate medical treatments, insurances, and other related issues. What is his involvement? Does he have power of attorney? Does she have an independent conservator? Who is helping this woman get through her treatments (or is she struggling on her own)? That’s the “go to” person. Every cancer patient needs one.

Thus, the best starting point would be finding out who is the “go to” person for the elderly friend. Who accompanies this woman to her treatments? Or has she been struggling with this issue by herself? Has she stopped treatments because she’s been too debilitated to get herself there? Is she terrified she’s dying and in denial? The reader and fellow co-workers could offer to drive her to and from treatments, couldn’t they? They could volunteer to stay with her during her treatments. They could be there when the side effects sideline her. They could find some positive ways to improve the quality of life for the patient that address her real needs, not her assumed needs. But they need to know who the “go to” person is and coordinate.

The minute anyone reads that a person with a cancer diagnosis has experienced a decline, it automatically becomes a medical issue. Whether it’s the cancer, the complications, or the stress of the disease, it’s critical to properly assess the patient’s condition, setting, support system, and services. No 75-year-old woman should be assumed to have dementia based on the observations of well-meaning, but untrained lay people.

The greatest danger that this 75-year-old woman faces is that she will be placed in a skilled nursing facility by her sibling because it is assumed her mind is failing due to dementia. If the real problem is that her breast cancer has metastasized, she could suffer through what remains of her life. She could be medicated with drugs used to treat dementia and not treated with drugs that would provide comfort at the end of life.

But the one point I would make here is that we don’t know what kind of relationship this 75-year-old breast cancer patient has with her cancer team. For all we know, they have done all the tests, diagnosed the disease accurately, and treated the patient humanely. If that is the case, perhaps what this patient really needs is the love and support of family and friends. Maybe she doesn’t know how to ask for it. Maybe she doesn’t know she can get it. So often, communication is a critical tool for a cancer patient, whether it’s talking to the oncologist or explaining problems outside the hospital setting. That nationally acclaimed advice columnist should have suggested that the reader and her associates find out more about how to help a woman dealing with breast cancer. There are plenty of good resources for that, ranging from The American Cancer Society to #BCSM, better known as Breast Cancer Social Media, formed by the late (and wonderful) Jody Schoeger and her social media partners, Alicia Staley (a great cancer advocate better known as Awesome Cancer Survivor) and Dr. Deanna Attai, a well-respected surgeon on the UCLA Breast Care Team.

I mentioned Jody Shoeger because I had the pleasure of interacting with her at a cancer blogger conference out in Arizona several years ago. She was the epitome of a wise and caring counselor for breast cancer patients, often reaching out to those who felt marginalized, isolated, and alone. She taught me about making assumptions one day, by correcting me — not all breast cancer patients have adequate support. I will never forget one post from her. She let a breast cancer patient anonymously share her painful personal story of being shunned by her husband once she was diagnosed. I have never been able to let go of that tale. It follows me wherever I go. It makes me determined to speak for those who don’t have the strength or the confidence to ask for help. I owe it to Jody now to share this with you. If you know a woman who is battling breast cancer, don’t throw your money into all things pink. Reach out and help in real ways. Learn what life is like for breast cancer patients and find out what you can do to help improve quality of life for a woman who is struggling. That’s what a real friend does.

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medication adjustment palliative care patient support

Do Cancer Caregivers Have a Role in Medication Management?

My mother was a big believer in quality of life. It mattered to her that her life with cancer was meaningful. She didn’t just want to exist. Knowing that helped me to be a better cancer caregiver. It enabled me to focus my efforts towards making her life as comfortable and active as possible.

I recently had a conversation with an elderly woman who wanted to share her discomfort with me. She wanted someone to know how difficult her life had become. In listening to her tale of woe, I was reminded once again that caregivers are often critical in making patients’ lives better. Here’s why. Her physician put her on a very powerful medication, one that my mother refused to take, and this elderly woman wanted someone to know that she hated it. I let her talk because she needed to “get it out of her system”. She was clearly frustrated with her medical situation, but it was more than that. She felt had nowhere to turn for answers or options. When she told me that the doctors never listen to her, I cringed. The truth is that doctor-patient communication is absolutely critical in pain management. Without effective and honest conversation, there’s no way a doctor is going to be able to solve a solvable problem. Doctors aren’t mind readers.

Neuropathy was one of the most frustrating side effects of chemotherapy for my mother. But the pain medication she was prescribed for this condition turned out to be more debilitating than the “pins and needles”. She felt like she was separated from her body and it “creeped her out”. When a patient reports feeling that abnormal because of a drug, sometimes it’s a drug interaction or reaction. The patient might need a lower dose or even a change. But if a patient doesn’t report this to the prescriber, how will the situation get better?

As a cancer caregiver, it was my job to understand how well my mother was tolerating the treatments she was receiving and to figure out ways of helping her meet her needs better. Sometimes that meant making sure that the medical treatment team had the important information they needed to make the best decisions. But for many cancer patients, it’s not always easy to share what’s really going on. Doctors often are busy, with back-to-back appointments. Cancer patients with fatigue are already dragging their feet as they go through the day. A high-energy doctor and a low-energy patient aren’t always a good combination. That’s why a wise cancer caregiver may sometimes need to step in and prompt a patient to share what’s really going on.

When you only have so much energy to get you through your day, when your thoughts are muddled by drugs, treatments, or even just the stress of having cancer, the path of least resistance can seem attractive. That means raising the white flag in defeat. Too many cancer patients turn away from the fight to get problems fixed.

This is why many cancer patients benefit from having cancer caregivers. We serve as support teams for our loved ones. We also serve as advocates. By accurately observing the symptoms our loved ones experience, and by putting these into logical context, we can often intercede to get the right help for our loved ones. We are sometimes the bridge between doctor and patient, and the better we can understand our loved ones’ experiences, the more likely we are to help them get what they need.

Is it because our loved ones feel like the walking wounded? Is it because they fear that the discomfort they experience is symptomatic of new issues? Or is it just that they don’t think there is any way to make a bad situation better? Sometimes cancer patients, especially those who have been in treatment for a long, long time, just kind of shrug off new problems with resignation. That’s why cancer caregivers have to pay attention and guide their loved ones to effectively communicate with the medical team.

In my mother’s case, the medication was just too strong for the amount of physical pain she had, and that meant that the medication, rather than relieving the symptoms, only made her feel “loopy” and not at all like herself. The solution was simple enough. She stopped that medication and went to something milder.

This wasn’t the only time that my mother was prescribed a pain medication during cancer treatment that made her miserable. She once was given a pain patch that drove her bananas. Some patients really don’t tolerate pain medications very well, and for them, the standard course isn’t always the right course. A good palliative care specialist always takes that into consideration when making adjustments. That’s the goal of pain management; to find the right balance between taking enough of the pain away to enable the patient to function at the highest level and making sure that the patient isn’t overmedicated. But, as always, the level of medication can be adjusted only when the patient and caregiver are able to effectively share the information with the medical team.

The loss of hope can have a profound effect on doctor-patient communications, especially when your loved one assumes there are no more options. A wise cancer caregiver understands that it’s not a matter of taking over and reporting to the physician on a patient’s situation. But it’s your duty to get real answers for real issues.

My mother was delighted to learn that things could indeed get better. Once she had the chance to see that the physician really did want to help her, she admitted she was having difficulty with medications. Mind you, there may be times when there aren’t a lot of alternatives. And sometimes where your loved one is with the cancer can effect the medication. But you should always encourage the dialogue. because sometimes the “not knowing” is worse than the truth.

My philosophy of listening and guiding paid off for the elderly woman. She called me a few days later, wanting to ask me some more questions about my mother’s experience with the drug she was taking. As she spoke, she acknowledged that her physician had previously prescribed a lower dose of the drug and she had felt much, much better. She couldn’t remember why he had recently increased the dosage, but he had. And the more she thought about it, the more she wished she could go back to the way she felt when the dosage was lower.

But she had already ruled out talking to the doctor, to the physician assistant, and to the nurse practitioner (right there you know there’s a significant communications breakdown.) What was left? The local pharmacist. Believe or not, sometimes the pharmacist who dispenses the medications can be a significant resource for caregivers and patients. Once I established the fact that she not only knew him and liked him, we discussed how approachable and personable he was. Could she feel comfortable asking him about the medication? Could she trust him to be straight with her on options?

The local pharmacist is often someone who can play a positive role in pain management, if for no other reason than he or she can be a fountain of information on side effects and ways to effectively manage these. Pharmacists can help patients and their caregivers navigate the issues without interfering in the patient-doctor relationship. If anything, a pharmacist can often help a patient understand better ways of communicating the real problems to the medical team. Is it because pharmacists aren’t usually perceived as intimidating, short on time, or uninterested, or is it because they understand drugs and drug interactions? Who knows. What’s important is that patients get what they need, and wise cancer caregivers know that any way you can make that happen, it’s a positive step in the right direction.

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breast cancer cancer treatment Marie Curie Cancer Center Light Up a Life pain management palliative care the elderly UK

How Could She Die of Cancer Without Anyone Knowing?

I lost someone precious. She was more than a relative. She was more than a friend. She was close to my heart. We shared laughter and tears as our lives traversed the years, she on that side of the Atlantic, and me on this side. And she died without anyone knowing she had cancer.

You would have loved her if you had the pleasure of meeting her. She had a great sense of humor and a wonderful laugh. She was a compassionate person and had a long career as a nurse. I can still remember when I showed up on her doorstep all those years ago — a young college graduate, with tennis racquet and duffle bag in hand. She greeted me with open arms at her front door, introducing me to joys of afternoon tea. Tea bag? Never. Coffee bag? Of course.

I went off to the local tennis courts to practice my serve or wandered around her village when she went to work. She wore her uniform to the hospital, looking very smart, right down to her starched cap and nurse shoes. She loved her job.

She had the quintessential cottage garden, a charming spot on a hot summer’s day. For her, gardening was a labor of love. Double petunias and begonias, she recently told me, were what should go in flower boxes. I couldn’t find double petunias for my garden, but I did think of her every time I looked at my abundant Wave petunias. I managed to plant some white begonias. They, too, thrived this summer, keeping alive our connection.

She was there to help me stay the course when my mother was in the final throws of cancer. She sent me little packages she knew would appeal to the caregiver in me. Those tiny gestures of comfort were like hugs across the ocean: a daffodil pin from the Marie Curie Cancer Center, a star pin from the Light Up a Life hospice organization, cheery offerings to let me know I was not alone. My favorite gift of all was a tiny package wrapped in turquoise paper and a red ribbon. It came with this beautiful sentiment:

“This is a very special gift
That you can never see
The reason it’s so special is
It’s just for you from me.

Whenever you are lonely
Or even feeling blue
You only have to hold this gift
And know I think of you

You never can unwrap it
Please leave the ribbon tied
Just hold this closely to your heart
It’s filled with Love inside”

Even as I recovered my bearings and moved from caregiver back to career, she was there for me every step of the way, encouraging me to keep at it. That defined her as a person. She was a lovely human being.

For the last year and a half or so, she had been sharing her health woes with me, telling me that she was fatigued, she just didn’t feel right. Her pain was getting worse in the last six months. It was clear from her notes that she was dismayed. She went back and forth for doctor appointments. Was it her heart? Was it something else? No one seemed to know. Maybe it was just old age. Except her symptoms never seemed to fit that diagnosis either. The pain just got worse and worse, and as it did, so did her misery. She did not deserve it, not after all the years she spent caring for others.

Sadly, it was only after she died that her cancer was diagnosed. All those months — nay, the last few years, were spent in needless suffering, even as the cancer invaded her body and spread, moving from organ to organ. No wonder she felt so terrible.

Whenever doctors wave away a patient’s complaints, whenever we caregivers accept the status quo for our loved ones, we truly miss the boat. Palliative care is about helping loved ones live as well and as comfortably as possible, but doctors need to know what they are treating. She should have never fallen through the National Health Service cracks like that, especially not with her experience as a nurse, and especially not with all her support of cancer and hospice organizations. She deserved much, much better than that. Someone should have listened, should have tested, should have made the effort. This was not just some little old lady with a touch of arthritis. This was a woman with undiagnosed cancer. It’s a travesty.

I know that there is one thing she would want me to urge you to do, something I wish I could have done for her. If your loved one has symptoms, but no diagnosis, ask this simple question: Could it be cancer?

Cancer is a sneaky disease. It can hide in organs. It can mimic other diseases. If your loved one doesn’t feel right and that sense grows over time, demand to know — Could it be cancer?

Many times, the symptoms don’t show up until it’s too late for cure, but that doesn’t mean it’s too late for comfort. Every person deserves comfort care and pain management. It never occurred to me that cancer was her problem. I thought it was her heart. I expected her to tell me she needed a stent or new medication. Anything but cancer. But I know now I should have asked. Could it be cancer?

For that reason, and because you care, make sure to ask when your loved one doesn’t get better. Could it be cancer?

And if it is, don’t stop there. Ask what can be done, not just to cure, but to comfort. Tuck this reminder away in your mental caregiver file. Don’t stand on the sidelines and hope for the best. Don’t wait for a doctor to suddenly become telepathic. If your loved one is not feeling better, act. How I wish I could have done more. Please remember her, remember her story, and do for your loved one what I could not. Press for answers. Could it be cancer?