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Understanding the Options

Your loved one’s initial diagnosis provided information as to the likelihood of outcomes, both for the best treatment option, treatment outcomes and likelihood of survival.1Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2009 (Vintage 2009 Populations), National Cancer Institute. Bethesda, MD,Accessed at http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, 2012.

The prognosis of those diagnosed with early stage head and neck cancer is good. The majority of people diagnosed with localized, early-stage (stages I and II) head and neck cancer (82.4 percent) will survive five years after diagnosis.1Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2009 (Vintage 2009 Populations), National Cancer Institute. Bethesda, MD,Accessed at http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, 2012. The majority of people diagnosed with regional, stage III head and cancer (57.3 percent) will also survive five years after diagnosis.1Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2009 (Vintage 2009 Populations), National Cancer Institute. Bethesda, MD,Accessed at http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, 2012. Although the outcomes for people diagnosed with stage IV head and neck cancer are not as positive as those with early stage head and neck cancer, 34.9 percent will survive five years after diagnosis.1Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2009 (Vintage 2009 Populations), National Cancer Institute. Bethesda, MD,Accessed at http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, 2012. Awareness of this information can help you and your loved one make timely end-of-life choices if the person with cancer comes to that point.

By making decisions for the end of life and completing the appropriate forms while still relatively healthy and able to think clearly, your loved one can help you, the family and health care providers know you are acting according to the patient’s wishes. The patient should choose the type of medical care he or she will receive at the end of life and communicate that clearly to you and the care team.

You may ask your loved one to reflect on some of the following questions and revisit the questions a few months later. Researchers asked people near the end of life what type of treatment options they would consider receiving, and many people changed their initial opinions, especially before and after hospitalizations.2, Lockhart LK, Ditto PH, Danks JH, Coppola KM, Smucker WD. The stability of older adults' judgments of fates better and worse than death. Death Stud. 2001 Jun;25(4):299-317.3Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making. 2006 Jul-Aug;26(4):313-22.

Questions to ask your loved one to consider:

  • What type of medical care do you desire at the end of your life? For example, do you want to receive CPR if you have a year or less to live?
  • Where is the ideal setting for the end of life? At home? At a hospice?
  • Is spiritual counseling important for you near the end of life?
  • If you cannot verbalize your choices near the end of life, would you like someone else to make medical decisions for you?

We will review the type of forms that your loved one will need to complete so the cancer care team will follow your loved one’s desires for end-of-life medical treatment.

Understanding the options: living will

If a patient completes a living will, the type of life-sustaining treatments he or she wishes to receive should be specified in the document.4Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276-85. The objective is that the health care professionals will not administer the treatments listed in the living will.

A health care professional will follow the living will provided two criteria are met: The person has a terminal illness (usually defined as a life expectancy of six months or less), and the person will not have the ability to make decisions. For example, if the person is unconscious, then he or she cannot make decisions.

If your loved one decides to complete a living will, then you both must present it to hospitals once he or she meets the criteria (i.e., life expectancy less than six months).4Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276-85.

If the state in which the patient resides has a Physician Orders for Life-Sustaining Treatment (POLST) program, then you may want to encourage the completion of this form with a health care professional.5Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64.

Understanding the options: physician orders for life-sustaining treatment

A Physician Orders for Life-Sustaining Treatment (POLST) can specify the type of life-sustaining treatments your loved one does not wish to receive, in addition to desires about resuscitation.5Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64.

An advantage of the POLST is that once it is completed, everyone at a hospital will know to follow the desires expressed within. Moreover, some states also have a registry. Therefore, if a patient goes to a different hospital, everyone at the other hospital will know what type of medical treatments are desired.5Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64.

POLST is typically used for people who have a year or less to live.5Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64. Although POLST programs now exist in most states, they still do not exist in all states.5Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64. If your loved one would like to complete this form, verify that your state has an established POLST program. If so, then instruct your loved one to complete the forms with a health care professional at the medical facility. Health care professionals fill out the POLST form with a patient, and then both the health care professional and patient sign the form together.

Understanding the options: do not-resuscitate order

A patient can choose to complete a do not resuscitate order, or DNR, if he or she does not wish to receive CPR if the heart stops beating or if breathing stops. This decision pertains only to CPR and does not affect other treatments, pain management or nutrition.

A DNR order can be added to a hospital or hospice chart by the doctor if requested. If the patient is not in a hospital setting, a DNR order can be communicated on a wallet card, bracelet or other means of notifying health care providers of the patient’s wishes. Ask a social worker or members of your care team for guidance if your loved one wishes to put a DNR order in place.

Understanding the options: medical power of attorney

Your loved one may want to consider choosing another person to be the medical decision-maker.5Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64. The selected medical decision-maker can decide the type of life-sustaining therapy that a patient can (or cannot) receive in the event that the patient cannot make a decision.5Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64.

If the patient gives you medical power of attorney, you should check in periodically with him or her to find out what type of medical care is desired (and not desired). The answer may evolve or change over time.


References

1 Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2009 (Vintage 2009 Populations), National Cancer Institute. Bethesda, MD,Accessed at http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, 2012.

2 Lockhart LK, Ditto PH, Danks JH, Coppola KM, Smucker WD. The stability of older adults' judgments of fates better and worse than death. Death Stud. 2001 Jun;25(4):299-317.

3 Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making. 2006 Jul-Aug;26(4):313-22.

4 Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276-85.

5 Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64.