What do caregivers do?

The better question is, what are they not doing?  In a 2010 study from the University of Minnesota and NCI, caregivers of lung and colon cancer patients were surveyed regarding their activities and stress and resources; these were caregivers who provided 50% or more of their loved one’s care.  What they found was that caregivers, without formal training, were having to monitor for treatment side effects, manage troublesome symptoms like pain and nausea, administer medication, and decide on when to call a doctor or give medication.  This is evident here at GRACE with the very thoughtful questions and discussions that caregivers have on behalf of their loved ones.  Half of the time, these caregivers were also working their own jobs; 1 in 5 had health problems.  In studies of caregivers not specific to cancer, caregiver stress leads to more healthcare, both for themselves and for the loved ones for whom they care.  In comparing caregivers to people who don’t do caregiving, caregivers of patients with cancer have a higher incidence of mood disorders, i.e. depression and anxiety, as well as stress-related health problems.  Compared to caregivers of patients with Alzheimer’s, a disease known to carry significant caregiver burden, caregivers of cancer patients experience the same amount of psychological stress.

Strategies for Caregiver Stress Management

Clearly caregivers carry tremendous burdens at times, but also find tremendous meaning and joy in being able to give to their loved ones.  However, as the proverbial flight attendant advised before take-off, “please place your own oxygen mask on first, then tend to others around you.”  This applies in spades to caregiving.  Caregivers need to care for themselves in order to care for others.

Ask for help

I mention this, not to state the obvious, but to consider sources and strategies for help.; caregivers are notorious for not asking, putting their loved one’s needs ahead of their own.  First of all, let your loved one’s oncology team know; sometimes there are resources within their practice or their cancer center that can help with identifying basic practical resources (equipment, for example).  Consider tasking out what you spend your time doing and then see what others can do instead of you.  Often, people will come to you asking to help, and it is often easier to dismiss them (kindly) than think of things on the fly.  There is no reason to answer inquiries immediately; take some time to identify tasks and assign them.  The flip side of this is that there may be close friends or family who are having trouble getting involved in helping; people have lots of reason for this, and it is sometimes difficult to discern why.  However, know that people cope in different ways with challenging situations; some will surprise you and help out when you don’t expect them.

Have your feelings, or they will have you

Cancer is a life-changing diagnosis for your loved one who has cancer, and for you as you care about them and for them.  Just as your loved one can go through emotional responses with their cancer, so can you.  This is normal and expected.  It can often help to share these with a trusted friend or a counselor.  There are also resources such as support groups that can provide a community of folks who are facing similar issues.

Take care of yourself

I know this sounds painfully obvious, but I don’t think I can stress this enough.  This certainly includes taking time out for yourself on a regular basis, but also getting to do your regular personal maintenance-things like going to see your doctor for your own check-ups, going to the dentist, getting regular exercise and sleep, etc.  These are key basic elements of personal care, but are often set aside when one gets busy with daily life, and more so when the stress of cancer enters the picture.  I would go one step further and recommend getting to do something you enjoy that is just for you, since I’m not sure too many of us enjoy going to the dentist-it doesn’t have to be anything monumental, even just eating your favorite meal, going for a walk or run, or catching your favorite TV show.  Know that you deserve it and it will help both you and your loved one.

For more information:

http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver

http://www.cancer.org/Treatment/Caregivers/index

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In the next room is a very vital 83 year-old woman who underwent surgery for a stage I adeno/bronchioloalveolar carcinoma in October of 2009.  Another physician had done testing for serum tumor markers in her just after surgery, showing an elevated CA-125 level, which is of unclear significance, but the other physician told her at that time that she probably had residual viable cancer.  I explained that I didn’t think this was necessarily the case; moreover, I felt that her risk of recurrence was low enough that I recommended against adjuvant chemotherapy.  Sure enough, her CA-125 (which I don’t typically check in the post-operative setting) drifted back down to the normal range with nothing but time, and on today’s visit she returns for a surveillance CT that shows no changes and nothing that suggests recurrence.  This scan is a cause for celebration, though she remains anxious about recurrence.   Her CA-125 level remains reassuringly low, though I send this test only because of the precedent that was established: her case only illustrates the perils of sending studies that we can’t interpret.

The patient I see next transferred her care to me from another oncologist several weeks ago.  She has advanced squamous cell NSCLC and had a very good response to chemotherapy last summer, but she also developed increasing neuropathy and fatigue with ongoing treatment.  As I read her treating oncologist’s reports of her ongoing treatment despite her acknowledged complaints of cumulative side effects from week after week of chemo, which are not surprising after more than six cycles of first line chemo, I wonder whether the financial incentive to recommend more treatment is a significant motivating factor in his failure to propose a break from therapy that it seems she could easily tolerate and really needs.  She was thrilled and relieved when I suggested that it would be completely feasible for her to take a break from treatment.  I am now seeing her a month later, when she’s feeling remarkably better in terms of her neuropathy, energy level, and overall outlook.   We agree to obtain a CT scan at her next visit, when we might discuss subsequent treatment options if her cancer shows clear progression.  On the other hand, if her scan is stable, I think it will be feasible for her to continue to enjoy a respite from treatment and be followed closely.

I then meet a new patient referred from a pulmonologist I work with, who unfortunately has a new diagnosis of metastatic lung adenocarcinoma, though physicians before me suggested that he could potentially be treated with curative intent.  I have the unenviable job of explaining that the PET/CT ordered since his prior visits confirmed spread beyond the point of curability.  After a broad discussion of how we approach advanced lung cancer and what treatment can offer, he and his wife are tearful and clearly somewhat shell-shocked.  We discuss treatment options, but I’d like to send his tumor tissue for molecular marker studies such as the presence of an EGFR or KRAS mutations or an ALK translocation.  We’ll defer on discussion of specific recommendations until the studies are back in a week, and this also provides the opportunity for him and his wife to process what we’ve discussed.

I next see a patient on clinical protocol.  He underwent surgery for stage I NSCLC a few months ago, but his cancer was low enough risk that he wasn’t inclined to receive adjuvant chemotherapy.  Instead, he was happy to have the opportunity to enroll on the MAGRIT trial that randomizes patients to either the MAGE-A3 vaccine or placebo as adjuvant therapy.  As we’ve seen with nearly every patient participating on this or other vaccine trials, he’s had essentially no symptoms from the vaccine: just a day of a slightly sore arm and some redness at the injection site.  He continues on the protocol, and we agree that it would be a great advance if the trial shows a significant benefit and that an easily tolerated vaccine would be either a valuable addition to or alternative for more challenging chemotherapy in the post-operative setting.

My last patient of the afternoon is a 59 year old never-smoking woman coming to the end of whole brain radiation and soon to start systemic therapy for her metastatic lung adenocarcinoma.  She had unsuspected, asymptomatic brain metastases, and while she was receiving her brain radiation, I had her tumor tissue sent for molecular markers.  She was found to have an activating exon 19 deletion in the EGFR gene, but she also has a T790M mutation associated with resistance to EGFR inhibitor therapy.  The latter is a common mechanism for acquired resistance to oral EGFR inhibitor therapy in patients who have a good initial response, but it can also be seen in previously untreated patients, in whom it is presumably a reason why the response rate to EGFR tyrosine kinase inhibitors like Tarceva (erlotinib) or Iressa (gefitinib) is in the 70% range rather than the 100% response rate we might expect.  Though there isn’t any established approach for this combination of mutations, I explain that I expect she wouldn’t have a high probability of a profound response to first line EGFR inhibitor therapy.  Instead, I recommend chemotherapy, and we discuss the details of my recommended plan for her to start cisplatin and Alimta (pemetrexed) next week.  She receives an injection of vitamin B12 and a prescription for folate and decadron premedication.  She’s anxious to get started with her chemo.

The afternoon clinic ends a little early because I’m meeting with some administrators and tech-oriented people at my institution to discuss the potential opportunities for developing tele-oncology.  I’m extremely interested in this effort and would love to pioneer this in my region, with a hope and expectation that this will become a widespread practice as the technology improves and bandwidth becomes less of a limitation.  I am thrilled to have leadership of my institution see the value of this, and I eagerly accept the opportunity to move forward with making early efforts a practical reality.

After the meeting, I head back to my office to complete paperwork (such fun!), take another stab at e-mail, and check into GRACE to see what’s happening.  Then I get a call from home: my wife asking me when I’m coming home…it’s time for me to get going.  I know I’ll be checking back in later.

That’s a pretty typical day, with some highlights and a few lowlights.   I was able to share some good news, get some hugs, and express some genuine optimism, along with sharing some unfortunate news with some people and inducing some tears.  Every day is a similar balance.  Over time, I’ve been amazed by the resilience of patients and caregivers in adapting to serious challenges and limitations, but I also see that oncologists adapt as well, sustaining ourselves with the positive, whether it’s the joy of telling someone that their CT years after treatment suggests that they’re cured, or helping a patient receiving supportive care with better pain control.  Though our impact is limited by the situation, if at the end of the day we’ve helped people, one way or another, I think we can take some comfort in that.

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A Day in the Life of an Oncologist: “How Do You What You Do?”     On the rare occasion I’m in a social situation with people who aren’...

   Work starts at about 7AM. At least the drive in avoids the big traffic.  I review my schedule, briefly reviewing the recent records of the people coming in that day, including a more detailed review of the records of new patients, including reviewing their scans that are usually delivered in anticipation of their arrival in my clinic.  Check e-mail, sign head shots in response to fan mail*, etc. (*in truth, it is perhaps technically more accurate to say that I sign dozens of orders for prescription refills and lab orders).

   Before clinic starts, I head to the hospital to round on inpatients of mine in the hospital.  One is a young man with testicular cancer who is doing fine on his chemo, though he’s grown weary of the hospital food after three admissions lasting 5 days each for inpatient chemo.  Fortunately, this is his last planned round of chemo, so the end is in sight.  And he knows I’m not responsible for the food.  At least his nausea is so well controlled that he’s interested in eating.

   Another patient is one I’ve known for a couple of years who, over a course of just a few weeks, developed dysphagia (inability to swallow larger bits of food).  She unfortunately was found to have clearly progressing disease around her esophagus after receiving chemo and radiation for locally advanced NSCLC, followed by radiation to the area when that was the only area of progression about 9 months after the initial chemo/radiation (not standard, but a hope of pushing the envelope to cure her cancer).  When the thoracic surgeon with great experience managing esophageal disease examined her to put in a stent to better open the esophagus, he saw that she actually has a small tracheo-esophageal fistula, an opening between the trachea and the esophagus.  Fortunately, that is being blocked by the well-placed stent, but this was an unwelcome complication, and I speak with her and her two children about plans to move forward with a trial of Tarceva (erlotinib) in a few weeks.  However, we’re all aware of the challenges we’re likely to face. 

   Clinic starts with a very nice, elderly patient who was recently found to have pleural metastases when she underwent surgery that followed initial chemo and radiation planned as induction therapy for stage IIIA N2 NSCLC.  Of course, we were all disappointed (bordering on crushed) that she had advanced, incurable cancer and that the scans she had after her induction therapy and before surgery hadn’t detected the disease before she underwent surgery (the surgeon looked, took biopsies, and then ended the surgery when he confirmed that the pleural nodules were cancer).  Immediately after surgery, I talked with her and her family about the potential value of a different, less challenging chemo, and I started her on carboplatin and Alimta (pemetrexed).  It may have been that she was still recovering from surgery, but she had a harder time than I’d have hoped or expected, so after some extra recovery time, we agreed to have her switch to single agent Alimta, which she received two weeks ago.  Having her come in at a time when I wanted to check her labs, she relates that she did just fine this time around, so we plan to try another cycle of single agent Alimta next week and then do a scan.  We consider perhaps returning to the doublet in the future.  We’re hopeful.

   Next is a return visit by a patient with metastatic lung cancer who is on maintenance therapy after responding on first line therapy, now positively giddy that she is feeling so well on a clinical trial with a novel agent (called imitelstat, which is a telomerase inhibitor).  Her last scan on the trial showed stable disease.  Every time she visits, she’s effusive in her gratitude and tells me I’m a miracle worker.  I half-heartedly (at best) deflect the compliment and am happy to continue the love fest.

   I then see a new patient, a lifelong never-smoking Asian woman with a new adenocarcinoma.  She looks and feels very well, but she unfortunately has metastatic disease documented on her imaging.  Though we need to frame the discussion of what treatment can do with the limitation that it isn’t curative, we talk about the very significant chance that she has an EGFR mutation or ALK translocation that could be associated with a high probability of having a long and very good response to one of these generally well tolerated oral agents.  I’m going to send her tumor tissue off for molecular testing and plan to see her back next week to review the results.  If she has an EGFR mutation, I’ll start her on Tarceva (erlotinib). if she has an ALK translocation, I’ll start her on chemo but plan to enroll her on a trial with the ALK inhibitor crizotinib as soon as she qualifies.  And if she has neither, I’ll pursue chemo, but we’ll discuss the details of that at the next visit, if that’s what it’s looking like.  There’s only so much we can cover in an initial visit.  She’s disappointed about the cancer not being curable,  but she has a realistic hope that her cancer may have a marker associated with a more favorable prognosis. 

    Following her, I see a very young man newly diagnosed with a metastatic squamous cell NSCLC.  He’s starting a clinical trial of first line carboplatin/Gemzar (gemcitabine) with or without the investigational PARP inhibitor iniparnib.  He’s happy to have been randomized to the arm getting the novel agent with standard chemo: he’s hopeful.  We also work on his pain control, which hasn’t been as good as I’d like, since he has extensive bone metastases (we’re also going to start XGEVA (denosumab) for that).  I start him on long-acting narcotics, discussing the yin/yang of bowel medications along with that.  His pain control may be a work in progress for a while, but we’re both looking forward to it improving over time.  I’ll be following him closely.

   My next patient is a woman who underwent surgery for a cancer of her renal pelvis, the collecting system of the kidney, which was followed by adjuvant chemotherapy.  She was diagnosed and treated over two years ago, and today her follow up scans look great, with no evidence of cancer.  We both know that she’s still at some risk for recurrence, but each favorable scan as more time goes by increases her odds.  I’m very optimistic.  Her life is back to normal, and her biggest issue is her desire to retire sooner than she thinks she’ll really be able to.  I’ll schedule one more scan in a six month interval, which I’ll go over with her, hoping to give her the same good news.  I get a hug.

   I then see a patient of mine with advanced NSCLC who started on hospice a month ago after deciding that she didn’t want any additional treatment, which I felt was a very reasonable thought, since she’s been on and off of treatment (which has also often been effective) for about 3 years.  She relates that she’s been extremely happy with hospice and the care they lavish on her, noting that her team has great experience.  We discuss the unfortunate fact that far too many patients don’t start on hospice until they’re extremely debilitated, missing the opportunity she has to develop a relationship with her team before her needs become more pressing.  We discuss and adjust her pain regimen, and I add another medication for her cough, and then we agree to have her come back to see me in another 4-6 weeks, as long as it isn’t a burden for her to come in.  I know that if it’s a hassle for her, I can work with the hospice team via phone and fax to optimize her care.

   Last before a lunch break is an ex-biker, ex-hippie who I’m treating for mucinous bronchioloalveolar carcinoma (BAC) that recurred, as I’d feared, within just a few months after his pneumonic BAC was resected.  We’d checked him for an EGFR or KRAS mutation, as well as an ALK translocation, and he was negative for all of these, so I started him on carbo/Alimta with Avastin (bevacizumab).  He’s done pretty well with treatment, but it knocks him down for several days after each treatment, a little more than I’d prefer.  Nevertheless, I’m happy to report that his CT that he just had completed, which followed two cycles of treatment, shows a very good partial response.  He’s not interested in making any changes.  He and his wife share a tearful hug.  I get a big hug, from each of them. 

   When I say lunch break, it unfortunately doesn’t necessarily mean that there is time to leave the building and get lunch.  Today that break (an hour on the schedule, but with inevitable delays in the back and forth of the day, it’s about 40 minutes) is primarily to catch up on records, return a phone call from a referring physician, catch up on dictations, etc.  Lunch will wait until a lull, as I have complete confidence, as you should too, that I will not starve by delaying a meal for a few hours.

   Though there’s more to the day, there’s already enough to cover just the morning, so I’ll continue with afternoon coverage later.  But you can already see that there are many hopeful and even joyful moments in the oncology clinic.

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A Day in the Life of an Oncologist: The Sequel (i.e., Afternoon Clinic) Following a busy morning, I grabbed a quick lunch and, as usual, ate quickly at m...

There are several major factors in this discussion.  First, patients and their circle of family and friends have their own preferences and predispositions.  Some patients come to their oncologist saying that there’s no way that they’re going to take chemotherapy, others say that they want everything possible and that they never want to stop trying, while others have more of a middle ground and express a deep concern for their quality of life along with our efforts to prolong survival.  Of course these preferences infuse our mindset.

Second, physicians have their own philosophies.  I have worked directly with physicians who are averse to treating beyond a point where there is an established benefit for treatment, while others are committed to treating patients to the point that their patients and family members worry about hurting the feelings of the doctor by expressing ambivalence or a complete desire to stop treatment.  Some transition to hospice readily, while others rarely initiate a discussion of hospice until their patient is barely able to participate in the conversation.

In all of this, the goals of treatment are important.  If the goal of treatment is cure, and that’s a feasible possibility, this tends to trump many other concerns, and we’re often inclined to accept a significant risk of short term toxicity, and even real danger, for the potential prize of a cure on the other side of the tunnel.  But most of the time when there’s a major question about how to proceed, it’s because cure is no longer a goal we can realistically focus on.  For oncologists, significant improvement in overall survival is generally considered the leading factor we’d prioritize, though the other side of the coin is the tolerability of the treatment.  An improvement in survival that amounts to just a few weeks is harder to justify if it significantly compromises a patient’s quality of life, but even a very modest benefit may well be “worth it” if it’s anticipated that the risk of feeling poorly is very low.

In the gray zone are endpoints like response rate and progression-free survival.  We are happy to see tumors shrink and/or have the cancer remain stable for longer, but if patients don’t live longer and experience side effects from the treatment, it’s hard to be very enthusiastic if the only benefit is one you need to show a patient on a scan.

Improving cancer-related symptoms is a very appropriate goal of therapy, even if it’s not associated with a survival benefit.  Just as survival benefit needs to be be considered alongside the toxicity of the treatment, an improvement in quality of life can be a sufficient goal of treatment even without prolonging survival.  Over the last few years, I’ve also come to sense that for some patients, not being on treatment is a very unpleasant, anxiety-producing symptom that can potentially be alleviated by the hope provided by ongoing therapy.

Putting this all together, a strictly data-driven oncologist very skeptical about the value of any further treatment might well recommend only the proven, evidence-based standards of care (or be pessimistic enough to recommend even less than that).   In some medical systems, this is the approach that is enforced because only the evidence-based standard treatments will be offered.

On the other end of the extreme are the oncologists who are optimistic enough or so disinclined to ever “give up” that there is always another treatment available for a conscious patient, and sometimes options for those who are comatose.  There is almost never a decision of when to stop treating if a patient can find their way into the clinic or be admitted to the hospital.

Between those two perspectives (neither of which is rare), there is a very wide continuum in which the oncologist is inclined to consider and very likely offer treatments that are unproven but might be helpful.   The decision of when to continue with more anti-cancer treatment vs. transition to a focus on symptom management and quality of life is the product of the combination of the possibility of benefit from unproven drug X, the probability of it causing side effects that will worsen quality of life, and the patient’s desire for more treatment.  We also have our own biases, such as feeling a compulsion to treat younger patients extremely aggressively.  The problem with both the reflexive temptation to over-treat younger patients, or  anyone who desperately want the most aggressive treatment we can imagine, is that the biology of a cancer doesn’t care about these factors and can’t be completely ignored.  These situations are often among the hardest we face, since a deep desire for more treatment doesn’t make a later therapy more likely to help or less likely to be toxic.

Given that both doctors and patients have their own philosophies about these issues, I think it’s appropriate that oncologists bend with the needs of their patients, and I know that patients often need to adjust their expectations based on what their oncologist recommends.  But even with some flexibility on both sides, incompatibilities do emerge: no oncologist is the right fit for everyone, and I’ve had a few patients leave my practice to seek an oncologist with a nearly inexhaustible list of possibilities.  There are certainly oncologists who have a large panel of patients who eventually find them after being treated by other oncologists who advised against more treatment, while the patient is not ready to consider that.

My general approach, with some lattitude based on the patient I’m working with, is to be very eager to recommend treatments that have an established benefit and to be very agreeable about continuing with less proven treatments that have a good rationale and are unlikely to be prohibitively toxic, as long as a patient has a good enough performance status to continue with treatment.  My personal threshold to favor a transition to a focus exclusively on symptom management and comfort is when I think it’s clearly more likely that additional treatment is going to harm a patient than to help them.  If a patient is debilitated enough, we do eventually reach a point when further treatment would have a greater chance of worsening survival than improving it.  I do accept the idea that relieving the anxiety of being off of treatment can represent an improvement in quality of life, but that in itself can’t justify harming a patient with the physical side effects of unhelpful treatment.

All of this said, there is no question that different oncologists have different philosophies that are not wrong and may be a better match for some patients.  However, it’s important to bear in mind that across the US, oncologists are very, very late in recommending hospice to patients, probably in large part because it is a difficult conversation for any of us to have.  While hospice is most likely to help patients and family members who have the opportunity to develop a rapport and relationship with the hospice team, it’s typical for patients to be referred to hospice mere days before they die — an opportunity for better help lost.

I welcome people’s questions and comments on this difficult and very personal issue.

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I’ve read all of the comments from everyone and hope and pray that all of you are still with us. Several of you asked about the possibility of finding peace while living with knowledge that one has a probable terminal illness, and how to actually live knowing that you are dying.

Of course this is difficult and of course you are going to find yourself thinking about how this is going to happen and whether or not you will suffer at the end, and feel anger that this has happened to you, and grieve for your newly perceived “lost longevity”, and for the loss of everything and everyone you love. Every emotion and painful thought you experience is completely normal; all of us will experience some or all of these psychological and emotional stressors on a daily basis. The key is dealing with them to enable you to live to the fullest extent you are able while living with this knowledge and the treatment issues come with the territory.

There are several helpful ways to deal with the thoughts and stressors. First, do not try to suppress them. You will not be able to do so anyway. Acknowledge them, verify that they are realistic and that there is very little or perhaps nothing you can do about the factual situation. Once you have done that, play Scarlett O’Hara; tell yourself that you will think about this again tomorrow, but that for today, it is enough! Second, keep on planning to do things that bring you pleasure; whether it is visiting with friends, having dinner at a nice restaurant when you have enough appetite to enjoy it; spending time with family even if too many people around you make you anxious; limit people to one or two at a time and tell them why you need to do so. Plan to go to a movie, concert or other pleasurable event at a time when you are between treatments so you can enjoy the event with reasonable confidence. Third, don’t put off anything you have really wanted to do in your life. One of you mentioned using money that been saved for retirement to take a cruise you’ve always to take. I can tell you that’s what I would do! I would try to eliminate any possible regrets I have some control of; obviously we all have regrets about actions we may have taken in the past, but we have no control over these; try to control what you can! Don’t feel guilty about it either, remember, you may be making wonderful memories for those you leave behind! Another of you mentioned that all of these thoughts and stressors get in the way of enjoying the very, very precious time you do have left. This is so true, don’t let them rob you of whatever enjoyment life still has to offer! Dr. Goldberg mentioned that the time you have left is the most precious commodity in the world! Use it well!

Lastly, I would like to address the fear of pain and suffering at the end of life that so many of you expressed. Most patient’s physical pain is very well eliminated with so many of the wonderful medications available for this purpose. Many patients are placed on a Morphine drip that can be increased as required; this can be done at home with in-home health care, in Hospice care, or in the hospital. At some point while on a narcotic drip, the patient will become non-responsive, major body systems fail, and the patient will die. There is no pain and the patient is unaware at this point in time. If someone needs to speak to the patient to finish some unfinished business; the amount of the drug can be reduced to induce consciousness, however this will cause discomfort for the patient and should rarely happen. Patients and families should speak to their physicians about where they want to be as their terminal stage begins, what is expected to occur and how these symptoms will be handled by the physician. Pain is generally managed well no matter where the patient decides he or she wants to be when they die; suffering is an existential matter and is usually related to occurrences in life for which the patient feels remorse or regret. I would encourage anyone to try make amends wherever possible, and if this is not possible, to discuss these regrets with your Minister, Priest, or Rabbi. This is almost always immensely helpful and usually generates a more peaceful passing.

There is so much more that can be said on this subject. We have really only scratched the surface! Death and the process of dying is a huge mystery. I have been fortunate to be with many people at the moment of death and that has been an enormous blessing. However, like all of you, I know that when my time comes, I will experience all of the same fears, concerns, regrets, and grief that are part and parcel of the human process.

Bye for now!

Leah

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What are advance directives?
They are legal documents that pertain to a patient’s designated proxy decision-maker and/or the patient’s treatment preferences. Advance directives are not just for people who are imminently dying. They are tools in the process of advance care planning and are for patients who are preparing for the future, in the event that they have a life-limiting illness or life-threatening condition. Every state in the U.S. has some kind of advance directive document in place. You may have heard terms like “living will” or “durable power of attorney for health care” or “DPAHC.” A “living will” refers to the portion of an advance directive that gives treatment directives; as these preferences are applied to when the patient is living, it is referred to as a living will. The “DPAHC” refers solely to the document that designates the proxy decision-maker for health care, separate from the durable power of attorney for finances. The DPAHC and the DPAF can be the same person or two different people. A patient can override their own advance directive at any time—both the treatment preferences and the proxy decision maker.

If you’ve ever looked at an advance directive, the language can be vague and often describes hypothetical circumstances; there have been efforts since the 1990s to improve upon standard advance directives. One widely used alternative is called “Five Wishes.” It is recognized as an advance directive in 42 states. The advantage of this document is that it incorporates more information about a patient’s values. The 5 “wish” categories include the designation of a health care proxy and treatment preferences, but it also has templates for patients to specify how they would like to be cared for, their desires for comfort at the end of life, and what else they would like their loved ones to know.

What’s the difference between an advance directive and a “DNR”?
While an advance directive describes a patient’s treatment preferences, a “do-not-resuscitate” or “DNR” is an actual physician order that carries out what the patient prefers specifically regarding resuscitation. A DNR does not mean a patient is on hospice or is not receiving any active treatment; it is solely in reference to resuscitation. If a patient has such an order in place, it is important that health care providers across different venues are aware; all states have ways to communicate such an order. Oftentimes this is a single-page form that accompanies the patient to wherever they are receiving their care; while in the hospital or in a skilled nursing facility this order sheet will reside with other physician orders, at home patients and families should keep it someplace visible and easy to access—emergency personnel usually recommend it on the refrigerator. In some states, patients can obtain a medical alert bracelet that states that they have a DNR order. As a physician order, the DNR should be honored by all medical personnel.

What’s the POLST?
Some GRACE members may have heard of Physician Orders for Life-Sustaining Treatment, or “POLST.” This is a new set of physician orders that expands the DNR order form to include other related orders. Six states have a formal POLST program and many others are developing one. The POLST form was originally developed in Oregon, as an order set for patients with serious illness and a limited prognosis—it does not take the place of an advance directive, since it does not require the designation of a health care proxy. It does give more specific information on a patient’s treatment preferences, beyond resuscitation to include the use of artificial nutrition, the intensity and focus of care, and in some states, the use of antibiotics. As physician orders, POLST forms accompany the patient across different venues and are printed on brightly-colored paper—for example, California uses “pulsar pink.” The efforts to use POLST forms are in large part a response to advance directives falling short of honoring patients’ preferences for their treatment.

I would be interested in hearing from GRACE members about their experience with any of these documents and whether they find them helpful in planning for the future. All of these documents are designed with the intent of making known and honoring patients’ preferences for their care, but in my opinion, they do not take the place of good communications between patients, loved ones, and clinicians. They serve as tools in the process of advance care planning.

For more information:
General information on Advance Directives: http://www.caringinfo.org/stateaddownload
Five Wishes: http://www.agingwithdignity.org/five-wishes.php
POLST paradigm: www.polst.org

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   The most important aspect of thinking about having these instructions is to make certain that your wishes and desires about such issues as how aggressive you would want your care to be if you were declining to the point that you could not speak for yourself, whether you wish to have a funeral service or not, what you might want said about you and your life in a eulogy, and all of the end of life care decisions that may need to be determined.  I would hope that any of you reading this column today have already completed these documents some time ago.  It is always so much easier to think about these issues when you are not ill and struggling with treatment, but if you have not done so already, perhaps reading this will help crystallize your thoughts.

   In many states, there is a document called POLST, which stands for Physician Orders for Life-Sustaining Treatment. In Washington state, this is a bright green form that is intended for use by physicians to write orders that indicate what types of life-sustaining treatment you want or do not want at the end of life.  The POLST form asks for information about:  your preference for resuscitation; medical conditions; use of antibiotics; and artificially administered fluids and nutrition.  The POLST form is voluntary and is intended to help you and your physician discuss and develop plans to reflect your wishes; to assist physicians, nurses, health care facilities, and emergency personnel in honoring your wishes for life-sustaining treatment; and to direct appropriate treatment by emergency medical services personnel.  A physician must sign the form in order for it to be a physician order that is understood and followed by other health care professionals.  The completed form is a physician order form that remains with you if you are transported between care settings, regardless of whether you are in the hospital, at home, or in a long-term care facility.  The best thing about this form is that it basically requires the patient and his physician to discuss these situations together so that your intentions are clearly understood and honored by your physician.

   Of course, even if you don’t live in a state where POLST forms are used, the links above can give you a great sense of the issues to be addressed.  They may help you generate your own thoughts on these subjects and assist in writing your own DNR and living will documents. The decision to have written directives is a very personal one.  The best way to make your wishes known is to put it in writing.  Some people find it comforting to have written directives; they feel it eases the load of decision making for family and friends.
Some of you may have already completed documents such as the Advance Directives for Health Care, which are authorized in most states, and chosen a representative to act as your Durable Power of Attorney for Health Care.  If you have completed these documents, you should clearly discuss the ramifications of your decisions with the important people in your life: your spouse, your children, your physician, your health care representative, and your siblings.  All too often, I have seen families disagree when their loved ones are dying, because they were not informed about the decisions made by that person when they were in a position to do so.  Adult children who live far away often feel tremendous guilt because they were not there to be with their loved one as the disease progressed, and parents often do not inform their adult children as well as they might, in an attempt to shelter them from the truth (I suppose the protective parent instinct never goes away).  This is why I feel it is so important to make a copy of the forms you sign to direct your health care and send them to your adult children, or at least discuss these directives with them.

   Finally, I would just like to clarify what are considered life-sustaining treatments.  There are several medical interventions that can lengthen a person’s life, delaying the moment of death.  These are:

• cardiopulmonary resuscitation (CPR): this may be inappropriate for certain patients such as those in the process of dying due to terminal illness, or those with an incurable illness, as its use would only lengthen the process of dying.
• respirator/ventilator: a ventilator may not be appropriate for a patient with a terminal illness, because the use of a ventilator may only prolong the process of dying.  In addition, ventilators can be uncomfortable for the patient and often require that the patient be sedated in order for them to tolerate it. The decision to take a patient off a ventilator is extremely difficult for families to make — it is far easier not to put a patient on a ventilator in the first place if the patient has a terminal illness.
• artificial nutrition and hydration: when death is certain or there is no hope of for recovery, the use of artificial food and fluids may only prolong the process of dying. Generally, enough fluid is given to keep the patient as comfortable as possible.

   Life-sustaining treatments do not include procedures or medication given to relieve pain.  A decision to forego life-sustaining treatment will in no way affect the care given to provide comfort and reduce pain.  Supportive care given for comfort and pain relief will always be provided.  And remember, you may change or cancel a Health Care Directive or Durable Power of Attorney for Health Care at any time.  Simply destroy the document, put your change in writing, and tell your doctor, nurse and family about the change.  If you change the directive, give new copies to all of the important people involved.

   As usual, I appreciate your comments, questions and any ideas you might have for another column!

   Bye for now! Leah

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For many years there has been a consistent observation made among cancer patients that married individuals tend to live significantly longer than do unmarried individuals. This observation holds true across different types of cancer including prostate, breast, and lung. For some reason, the warm support of the spouse at your side seems to be a broadly positive prognostic factor, in addition to the other numerous benefits…

There are any number of reasons for exactly why this might be so. Patients who are married tend to have better financial resources and also have better social support, two elements that independently seem to predict for patients doing better. Marriage also frequently results in children (although marriage not required), which can provide additional support at trying times for elderly patients. There are also reasons to think that patients who are NOT married may have problems that contribute to poor outcomes including psychological problems such as depression, substance abuse, and poor health for reasons other than their cancer. Loneliness is a big problem for my unmarried, elderly patients and I can see first hand that their lives are much harder during treatment than those with big families at their sides.

Of course, this is not new data. What is new is a recent study by Dr. Gwen Sprehn and colleagues as Indiana University School of Medicine, recently published in the journal Cancer. Dr. Sprehn used the SEER database to examine the marital status of more than 3 million cancer patients, and this time broke down the 5 and 10-year survival rates by not just married/unmarried but by more specific states. She included married, never married, separated, divorced, and widowed status (at the time of cancer diagnosis) in her analysis.

The best overall survival was seen in the married group, with 5 and 10 year survivals of 63% and 57% respectively. This simply confirmed what we already knew. However, the next highest survival was seen in those who had never been married, at 57% and 52% at 5 and 10 years. The patients who had been divorced or widowed each did worse than never married patients, and the worst of all was those who were married but separated at diagnosis (45% and 37%). Clearly having marrital strife affected their disease outcomes!

There did not appear to be any specific disease-related factor that caused this affect, so why would separation be worse for cancer survival than divorce or being widowed? The authors argue that this could be due to the relationship between high levels of stress and a depressed immune system, which is a well documented effect. Apparently animals that are put under stress have enhanced cancer growth and metastasis in cancer models compared to calm and happy animals. There have also been a number of observations that stress can adversely affect the immune system in cancer patients, as measured by blood markers of immune function and assays of immune cells. Of course, this is only speculation, and other factors such as lack of acute social support and financial problems associated with impending divorce could also be in play.

In any case, it appears that if you get benefit from being married, it is only if you STAY married. The next question is, of course, what can be done about this? Identifying patients having marital issues at diagnosis or during treatment may be an important issue to pick up on. Such patients may benefit from counseling and additional support, which at the very least may improve their quality of life even if it doesn’t improve their survival!

Marriage counseling

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Caregivers: The Most Important Care Providers for Cancer Patients Behind every patient with cancer, there are caregivers.  In the medical literature...

I retired at the end of June from the Swedish Cancer Institute, and have just been lazy since then. I figured I was entitled to a couple of months of doing nothing, after 23 years working there! But now, I am rested, relaxed, and raring to go!

Since coping with a cancer diagnosis and living with the disease is so difficult for many patients, I thought I would just start out with some simple thoughts from a handout I would routinely give to patients to help them deal with their stress and anxiety. I hope it will be helpful to you!

DAILY THOUGHTS FOR YOUR MENTAL COMPUTER
People have recovered from every type of cancer.
Cancer patients can expect to live longer than either heart attack or stroke victims.
A positive attitude helps let go of stress and worry (I know that is not always easy to maintain).
It helps to learn the details of your kind of cancer.
A fighting spirit is healthier than stoic acceptance.
Many patients whom doctors consider difficult are those who are most likely to do well, or live longer than expected.
A fighting spirit can strengthen your immune response.
It’s better to express your feelings than to bottle them up.
Hope and trust help counteract stress.
Stress comes from your own interpretation of events (This is a tough one to get a handle on. Consider how your own self-talk impacts your thinking about your situation).
Hope gives you control.
Refusal to hope is a decision to die (One must hope that the treatment will be of value in extending life, or why bother to take it? At that point, it is self-defeating.)
Consider yourself an equal partner with your doctor in achieving recovery or response.
Listen to your body.
Remember you have power over your body.
Don’t make a career of having cancer.
Don’t save up real living for tomorrow, Live your best today and every day.

I would love to hear from you, and your friends and relatives; especially with any comments or ideas or questions you may have that could benefit you and yours in traversing the cancer journey.

Nice to be back on board!

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   Salivary amylase was used as a proxy for studying activation of the sympathetic nervous system (a.k.a. adrenaline, responsible for the “fight or flight” response).  Normally, this enzyme in saliva declines sharply after awakening and then rises throughout the day.  As expected, this diurnal rhythm was preserved over time in the healthy volunteers.  Caregivers, on the other hand, experienced loss of this normal rhythm over time and then gradual recovery.  C-reactive protein is a measure of systemic inflammation and high levels are a well-documented risk factor for cardiovascular disease.  At the study entry, levels were similar in caregivers and volunteers; however, over time, the caregivers demonstrated increase in CRP.  In fact, half of them developed CRP levels >3 mg/L, a level considered to be a marker for high risk of cardiovascular disease.  CRP levels did not reach a plateau but continued to increase over the year of the study. Over time, caregivers also demonstrated lower expression of anti-inflammatory signaling molecules.

   Interestingly, cortisol output was similar in caregivers and controls, leading the investigators to hypothesize that the sympathetic nervous system rather than cortisol may be directly driving inflammation and suppressing normal anti-inflammatory molecules. On a questionnaire used to evaluate for depression, 67% of the caregivers had scores that indicated depression at the time of study entry.

   What does this study add to our understanding of the experience of being a caregiver for a cancer patient?  The findings are not particularly surprising but, I think, are an important starting point.  The methodology is important: it can be misleading to measure stress responses or hormone levels at a single time point, for example, just after a patient has been diagnosed or during intense chemotherapy and radiation.  This study did follow caregivers over a fairly long period of time and employed multiple measurements at each time point.  The use of a control group also lends credibility to the findings. 

   What can we do with this information? Although it is difficult to do prolonged studies, I think it would be important to continue to follow the caregivers over time.  Since their levels of CRP continued to rise over the year period and had not plateaued at the end of that time period, I think it would be important to try to determine when, if ever, caregivers return to normal.  It would also be important to follow them to figure out if these altered hormonal/inflammatory markers actually led to an increase in cardiovascular disease or other illnesses.  We don’t know whether elevated levels of CRP in someone going through tremendous stress have the same implications as when someone has elevated levels of CRP for no particular reason.  It has been my experience that many caregivers neglect their own health when a family member is going through cancer treatment.  High rates of depressive symptoms were reported in the caregivers but no information is provided about whether any of them got medical treatment/counseling.  A future study might monitor these same biohormonal changes in a group of caregivers given counseling or other treatment for depression.

   Do these findings apply to caregivers of patients with other cancers? This is unknown. Because of the demographics of brain tumor patients, caregivers in this study were much younger (median age 50) than most of the primary caregivers of my lung cancer patients.  I wonder if the effects might be more pronounced in an older population with more medical problems at baseline.  Alternatively, perhaps a brain tumor diagnosis is particularly challenging for caregivers.  It would also be interesting to follow whether there are any correlations between these neurohormonal measures in patients and levels in caregivers.

   I’m glad to see a study like this in oncology, though I think we still have a long way to go towards helping families cope.  Although providing medical care to family members goes beyond the scope of most oncologists’ practice, I think we can at least be more aggressive about enlisting the help of our oncology counselors and social workers.  And put in a plug for family members to continue with regular doctor visits and medical care.

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Caregivers: The Most Important Care Providers for Cancer Patients Behind every patient with cancer, there are caregivers.  In the medical literature...