GRACE :: Coping with Cancer / Social Work

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…

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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!

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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