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Making Peace with End-of-Life Decisions

You, your caregiver and your cancer care team will have many decisions to make over the course of your cancer journey. People use different methods of making decisions and have varying comfort levels with their involvement in the decision-making process. Some people like to choose physicians they trust completely and hand all decision-making over to the medical professionals. Others want to take an active role in the decision-making process from beginning to end. You should think carefully about your decision-making preferences and choose a cancer care team that matches your philosophy of involvement in the process. Note that patients generally have better outcomes and perceived quality of life when they are actively engaged in making decisions about their cancer care and treatment.1 Kiesler DJ, Auerbach SM. Optimal matches of patient preferences for information, decision-making and interpersonal behaviour: evidence, models and interventions.Patient Educ Couns.2006;61:319-341. Only about 2 percent of patients report being asked how much involvement they desire during an initial consultation.2 Elwyn G, Hutchings H, Edwards A, et al. TheOPTIONscale: measuring the extent that clinicians involve patients in decision-making tasks.Health Expect.2005;8:34-42. So if you want more involvement in your treatment decisions than you are being offered, ask for it.

About 50 percent of cancer patients feel that they are offered more than one treatment choice.3 Stacey D, Paquet L and Samant R. Exploring cancer treatment decision-making by patients: a descriptive study. Curr Oncol.2010 August;17(4):85-93. Those who are offered choices are more satisfied and remain more actively involved in their treatment.3 Stacey D, Paquet L and Samant R. Exploring cancer treatment decision-making by patients: a descriptive study. Curr Oncol.2010 August;17(4):85-93. About 85 percent of patients say they want more information about treatment choices, including the risks and benefits of multiple options.3 Stacey D, Paquet L and Samant R. Exploring cancer treatment decision-making by patients: a descriptive study. Curr Oncol.2010 August;17(4):85-93. The more informed you are, the more likely you will want to be involved in decision-making about your care.3 Stacey D, Paquet L and Samant R. Exploring cancer treatment decision-making by patients: a descriptive study. Curr Oncol.2010 August;17(4):85-93. However, when the stakes of a particular decision are very high, it is normal to seek additional support from your doctors. You will also be more likely to question your own decision-making when you feel as if none of your options are good. This uncertainty and self-doubt is called “decisional conflict,” and it can cause psychological distress.4 O’Connor AM. Validation of a decisional conflict scale.Med Decis Making.1995;15:25-30. This is when shared decision-making can be effective.5 Gattellari M, Butow PN, Tattersall MHN. Sharing decisions in cancer care.Soc Sci Med. 2001;52:1865-1878.

Shared decision-making

Shared decision-making is when you and your care team work together to make important decisions about your care and treatment.3 Stacey D, Paquet L and Samant R. Exploring cancer treatment decision-making by patients: a descriptive study. Curr Oncol.2010 August;17(4):85-93. It is a good idea to include your caregiver in this process as well since he or she will also be impacted by these decisions.6 Hubbard G, Illingworth N, Rowa-Dewar N, Forbat L, Kearney N. Treatment decision-making in cancer care: the role of the carer. J Clin Nurs. 2010 Jul;19(13-14):2023-2031. Having your caregiver on board with your and your care team’s decisions will help you feel more confident that you are making the right choices. This will in turn help you to feel at peace with your decisions.

End-of-life decisions

The most difficult decision for most cancer patients is the decision to stop curative treatment (treatment that is meant to eliminate your cancer) and begin palliative care (simply relieving pain and suffering when a cure is no longer possible).7 de Haes H, Koedoot N. Patient centered decision making in palliative cancer treatment: a world of paradoxes. Patient Educ Couns. 2003 May;50(1):43-49. If you reach a stage when it becomes clear that there is little or no chance that your cancer can be cured, you and your caregiver will go through a range of very strong emotions, which is part of what makes this decision so difficult.

Some oncologists assume that patients want to continue aggressive treatments regardless and continue without asking for the patient’s input.7 de Haes H, Koedoot N. Patient centered decision making in palliative cancer treatment: a world of paradoxes. Patient Educ Couns. 2003 May;50(1):43-49. Other oncologists ask their patients to make the decision themselves about whether or not to continue treatment. Making the decision yourself or with your spouse, while relying on information and support from your cancer care team, is usually the best way to feel at peace with this most difficult of decisions.

If you decide that you do not want to go through debilitating and ultimately unhelpful treatments in your final days, make this clear to your care team so that they can shift to end-of-life care that is aimed at making you as comfortable as possible. Explore your options, which may include hospice care, in-home care or a nursing facility. To make this decision and be at peace with it, be thoroughly informed. Be sure you know exactly what your options are and what is likely to happen with each one. Also keep your spouse or partner, who is probably your primary caregiver, closely involved with all end-of-life decisions.

Your circumstances may change very quickly, and at times you may feel numb or as though this is happening to someone else. Everyone reacts differently and copes in his or her own way. Anything you may feel is completely acceptable.

Finding peace with end-of-life decisions

You may find that trying to make peace with your decisions can help you and your caregiver better cope through this difficult period. Ways to do this can include:

  • Giving Yourself Time and Space to Adjust to What’s Happening
    It’s natural to grieve and to feel desperate, angry and overwhelmed—how you try to adjust to this should be up to you, whether you want to be surrounded by family or want some space.
  • Knowing Your Options
    It can be helpful to know what support is available, such as palliative and hospice care, so you can feel as comfortable and pain-free as possible. Understanding your medical and legal options may also help you feel more at peace.
  • Sharing Your Feelings
    Sharing your sadness and fears with people close to you can be a great relief and may help you cope. It can also help your family and friends better understand your situation so they can support you more effectively. You may also wish to talk to someone outside your immediate family and friends, such as your priest, social worker or a support group.
It’s about the moments that count. It became about moments, and not about days or weeks. It was just the moments that we had together, when we could feel normal for just a minute or a second. It meant something for both of us.Bonnie S. (wife of a tonsil cancer survivor)

References

1 Kiesler DJ, Auerbach SM. Optimal matches of patient preferences for information, decision-making and interpersonal behaviour: evidence, models and interventions.Patient Educ Couns.2006;61:319-341.

2 Elwyn G, Hutchings H, Edwards A, et al. TheOPTIONscale: measuring the extent that clinicians involve patients in decision-making tasks.Health Expect.2005;8:34-42.

3 Stacey D, Paquet L and Samant R. Exploring cancer treatment decision-making by patients: a descriptive study. Curr Oncol.2010 August;17(4):85-93.

4 O’Connor AM. Validation of a decisional conflict scale.Med Decis Making.1995;15:25-30.

5 Gattellari M, Butow PN, Tattersall MHN. Sharing decisions in cancer care.Soc Sci Med. 2001;52:1865-1878.

6 Hubbard G, Illingworth N, Rowa-Dewar N, Forbat L, Kearney N. Treatment decision-making in cancer care: the role of the carer. J Clin Nurs. 2010 Jul;19(13-14):2023-2031.

7 de Haes H, Koedoot N. Patient centered decision making in palliative cancer treatment: a world of paradoxes. Patient Educ Couns. 2003 May;50(1):43-49.