GRACE :: Coping with Cancer / Social Work

Upcoming #LCSM chat: What do patients want and need from online networks and their doctors?

GRACE recently held a very successful patient forum on the lung cancer associated ALK rearrangement and treatments for it, and it began with our focusing on how patients and caregivers sought information and work with their doctors.  Though it may have been reflective of the specific audience there, who came from a specific online community, I was struck by how much support and information patients gained from each other. I knew that patients could be remarkably sophisticated and share detailed knowledge at a level that rivals and may well exceed the level of conversation among cancer specialists, but it was remarkable how many of the patients and caregivers there expressed that there is a particular expertise and credibility that comes from gaining insight from someone who has traveled down the same road as you. In this sense, patients with a deep knowledge can convey an understanding and provide a hope that even the best doctor can’t offer: living proof that you can know this and do as well. 

In preparation for this program, some of us planning this event also debated whether to convey survival data in the usual tables and figures that are shared among oncologists.  Specifically, does a detailed discussion of statistics confuse people, scare them, or inform them?

Also, some patients expressed a strong desire for self-determination of their treatments, while others conveyed that above all else, what they’re looking for from a trusted oncologist is a clear recommendation of a best way to proceed based on their knowledge.

Understanding that different people probably fall all along a spectrum, our upcoming #LCSM tweetchat on Thursday, February 27th at 8 PM Eastern, 5 PM Pacific will focus on the following open questions:

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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, this caregiving is referred to as “informal caregiving,” which simply means that it is not paid caregiving from a home care agency or care provided in a skilled nursing facility. Informal caregiving provides the majority of care to patients in this country; if informal caregivers were paid, their value would exceed that of all home care agencies and skilled nursing facilities combined.

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. Continue reading

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 my desk while completing transcriptions and catching up on e-mail before diving into the afternoon. My first patient of the afternoon was a 75 year-old gentleman with prostate cancer who has done very well on combined androgen blockade for many years. Though his PSA has been rising very slowly, he continues to feel well, and his PSA remains low enough to defer on making any changes. I explain to him that even though we may need to switch to a different treatment approach in a few years, the slow rate of rise after so many years on his current therapy makes it very likely that he’ll do very well on subsequent therapies, whenever we pursue them. There’s an excellent chance that his cancer won’t limit his survival. It’s important to remind ourselves that we have a risk of over-treating as well as under-treating cancer, and this concern permeates management of prostate cancer, which can often follow a very indolent course even as a systemic disease.

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.

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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’t in medicine (yes, I’m sure you know I don’t get out much, so this is largely from remote memory), the most common question that follows my answer to what I do for a living is, “How can you do what you do?”. People imagine the obvious low points of telling people about a new cancer, about delivering bad news and discussing people’s difficult cancer-related symptoms and potential to decline despite our best efforts. It’s fair to wonder what keeps us going. So I thought I’d provide a brief sketch of a day in my clinic, which offers several ups along with the downs everyone might envision as dominating life in the oncology clinic.

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).

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Cancer Treatment: How and When Do We Reach a Point Where More Treatment is Too Much?

This topic is very central to treating cancer, but that doesn’t make it easy. It’s not one that I think is taught in medical school, but rather one that is learned over the course of directly caring for patients over time. It’s incredibly complex because doctors have remarkably different styles in their approach, and even the same doctor may work very differently with different patients. For something that is so integral to the practice of oncology, the topic of how and when do we get to a point that further anti-cancer treatment isn’t advised is a murky mess.

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Death and Dying Redux

Hello again. Dr. West contacted me recently and stated that there had been a number of responses and question related the column I wrote on Death and Dying some time ago. He asked if I would respond to these wonderful people who voiced their concerns about this issue. I couldn’t believe that it been that long since I have written a column about anything, and I do apologize! I guess it is true that when people retire, they find that they are busier than ever! With Dr. West’s approval, I hope to remedy that situation, and promise to write at least two columns a month, especially if your questions and comments keep on coming.

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.

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Advance Directives: Nuts and Bolts

The term “advance directives” has been in use for decades now, particularly since the passage of the Patient Self-Determination Act of 1990 which propelled advance directives into hospitals and health care facilities as the document that would end confusion about treatment preferences and surrogate decision-makers. Unfortunately, this has not reflected the entire experience with advance directives; research has shown that even when those documents exist, clinicians and health care institutions do not follow them well. There have been some benefits to advance directives, even if they did not solve all the problems surrounding medical decision-making and communications between health care providers and patients. In one study of patients who passed away in the hospital, the existence of advance directives was correlated with less stress for those family members compared to the family members of patients who did not have advance directives.

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.

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The Delicate Issue of the DNR Order

Hello again! I’ve been looking at the discussions posted on GRACE, and noticed that there have been quite a few references to both do not resuscitate (DNR) orders and living wills, so I thought I’d put my two cents in as well. Like Dr. West and Dr. Sanborn, I also have both of these completed, and have had for many years. There must be something connected to working in the health care field that makes us more aware of the need for such documents.

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

An Argument for the Sanctity of Marriage, but Beware: Separated Cancer Patients Have Poorer Survival

It has been a while since I’ve posted here, and it is nice to be back again! I have been compiling a list of some interesting topics (to me) for future posts, so hopefully we can have some good discussions in the comments section. This particular topic is not specific to lung cancer, but certainly applies to lung cancer patients as much as any other malignancy so I think it will still be of interest.

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.

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Getting Your Mind Around Cancer

Hello again! It definitely has been a very long time since my last entry in GRACE; I’ve missed all of you!

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!

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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