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Why See An Oncology Social Worker? by Leah deRoulet


February 24, 2008 - 8:43 am printer friendly view / write comments
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Dr. West

   Hello again!  Some of you may have wondered why any patient would choose to see an oncology social worker.  I thought I would take this opportunity to explore the top reasons why patients come to see me in the first place.  These are not in any particular order, except for the first one, so I won’t dwell on each and every one.  I will just bring them up, and if any of them strikes you as information you would to hear more about, please add a comment, and we can discuss it further.

1. I would say that the top reason is the one I wrote about in my first column.  The anxiety, stress, and fear concerning the diagnosis and treatment of whatever cancer they have been diagnosed with.  Will they be able to tolerate the treatment? What about the side effects?  How will this new intruder effect their lives?  Will they be able to work?  And most of all, what about their family?

2. Family concerns are always right up near the top!  No matter if a person is the bread winner, or the caregiver for children or elderly parents, or is a working wife in a two income family with lots of other family responsibilities: everyone in the family is bound be caught up in the patients needs for downtime, rest, transportation, companionship, and assistance with many of the daily events we all take for granted.  Children are always an important concern.  How much to tell them about the parent’s cancer?  What is the appropriate amount of information and what kind?  How to normalize their lives as much as possible when everyone’s life around them is falling apart, at least temporarily?

3. Work and Disabillity Issues.  Many people are able to work at least part time while on treatment, but many others are told by their physician that they probably should not work during this time.  Even if patients have short term disability, it will most likely pay for only 60% of their earned income if they cannot work.  If the family is a two income family and one of the earners cannot work, that will eventually lead to financial concerns, and I have rarely met a family that doesn’t experience these during cancer treatment.  If medical insurance is tied to the job, that also presents a problem, since most of us cannot afford to purchase health insurance on our own.  Some companies provide coverage, often known as COBRA, but others require workers on disability to pay for this insurance, and it is pretty expensive.  Some families have no health insurance, and this is often the reason they are referred to see me by their health care provider, since it is rare for treatment to begin until a thorough assessment of the insurance issues is made and it becomes clear whether the person is eligible for Medicaid or charity care or both, if the institution provides some charity care.

4. Caregiver issues.  How to talk to friends about what is really helpful, and how to organize a helpful team, so that what needs to get done in the household actually does get completed without too many tuna casseroles being dropped off, while the laundry piles up , and the floors go unvacummed!  Most of us are conditioned to not ask for help or to refuse it if it is offered.  Now is the time to say yes, and to be directive about what you need help with.  People do much better with providing assistance if there is an actual menu of tasks to choose from.  Always assume that the people offering really mean what they say and are happy to help.  Honesty about the family’s needs at this time can be a real gift to friends and relatives!

5. Recurrence of the disease, which can be a very real risk.  This is everyone’s nightmare!  There are many people who never see a social worker during their first experience with cancer; but if a recurrence happens, then often the patient feels as though they need to talk to someone objective about their situation.  The social worker can become a wonderful mentor during this time and may continue the relationship for years if the patient so desires.  During one’s first experience with cancer, most patients have great faith that their treatment will work and they will never have to go through this trauma again.  If there is a recurrence, hope is often more difficult to keep ablaze: if the treatment did not work the first time, what is there to guarantee that it will work the second time?  Depression is common at this time and the patient may require medication to treat their depression for awhile.  It is absolutely normal to feel depressed if cancer returns, but most oncologists, and certainly oncology social workers are trained to distinguish between normal sadness and true depression.

6. Marital or Relationship Conflicts.  A family that was dysfunctional prior to the cancer diagnosis will definitely need counseling, a group, or some additional attention by health care professionals, since whatever their dysfunction is about; it will be increased by the stress of the cancer experience.  Sexuality and intimacy issues will surface if they were not there already.  Certain types of cancers, such as those impacted by hormone treatment carry with them the probability of loss of libido, and chemotherapy and radiation both increase the patients fatigue levels to such an extent that just getting through the day may be all that the patient is able to manage.  If clear and open communication is lacking in the relationship, the couple may need some coaching in talking about their real feelings relative to how they are coping with the cancer in their family.  This is a huge topic and one I have barely skimmed the surface of, and even the most well-adjusted, loving couple may experience problems in coping, and are often embarrassed to discuss it.  However, it is also one of the most important!

7. Finally, people come in to talk about the whole spectrum of death and dying issues.  From the legal papers necessary to be completed, such as the Directive to Physicians, or the Durable Powers of Attorney, both Medical and Legal, to Hospice Care, or questions about what their dying process is going to be like – if the patient is thinking in this way, they will often come in to ask the questions that are troubling them.  Generally, patients will come in alone to discuss these issues, sometimes because they believe their loved ones are not ready to talk about this topic, or because they want to hear the answers themselves first, and then invite the family in for further discussion.  It is always interesting to see how many people try to protect their loved ones from this discussion, choosing to believe that the loved one is not already worrying about it.  Nothing is usually further from the truth, and most people are immensely relieved to talk openly and honestly about their end of life worries.

   Of course, the reasons that patients choose to see an oncology social worker are as varied as the patients themselves, but these are the most common topics of discussion. 

   What do you want to hear more about? 

   Let’s talk! 

-Leah

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  1. February 24, 2008 - 5:50 pm

    Hi Leah,

    I just wanted to let you know how much my interaction with a social worker helped me. I crashed six months after my diagnosis when I found out that the cancer was on the move again. I really did not think there was a thing anyone could tell me that would help but fortunately I found someone who was able to help me begin to accept my diagnosis, prognosis, and the general end of life as I had known it. I truly do not know if I would have made it without her help. She turned out to be a perfect fit for me…not too much sympathy but some concrete ideas for dealing with all that was happening. I think your services are so valuable and extremely under-utilized. I highly recommend counseling for all the lung cancer patient that I talk with. Now I am struggling a bit with the fact that I am still here….I guess we are never happy. Thanks for all you do.

    Myrtle

    myrtle
  2. March 2, 2008 - 7:24 pm

    Hi Leah,

    How does go about finding a good Oncology social worker to discuss several of the issues that you have raised in your article?

    Thanks,

    Prem

    prem
  3. March 11, 2008 - 12:15 pm

    Dear Prem; Most oncology social workers are employed by the larger cancer treatment centers around the country. Here at our institution, I could see a patient from the general community for up to 3 visits if there is social worker available where they are being treated. There are many private practice counselors in most communities, some with a specialty in chronic illness including cancer, but rarely in just cancer and its aftermath alone. I would encourage you to seek out one of these avenues, or join a support group faciltiated by SOcial worker, as that will also give you a way to talk to someone during the group or before or afterwards. Most groups do touch on the issues I raised sooner or later depending on what members want to talk about. And don’t forget the community based support agencies, such as Gildas Club or the Wellness Center, most of these also employ trained counselors. As a last resort, if none of these are available or accessible, please write back and ask a question, I might build a column around the answer, but I will certainly reply! Good luck! Leah

    LeahMSW
  4. March 11, 2008 - 1:33 pm

    Dear Myrtle; Thank you so much for your kind thoughts. I am happy that you have found help for yourself through talking with an oncology social worker. It is so important to know that you have another person in your corner who is there for just that purpose! Keep up the good work! Leah

    LeahMSW
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