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End-of-Life

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Your loved one’s emotions and ability to cope during his or her cancer journey are interconnected with your emotions and reactions.1 Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012 Apr 10;30(11):1227-34. Recognizing and taking care of your own needs can help you provide the best support for your loved one during the end-of-life period. It is likely to be one of the most difficult situations either of you have ever dealt with, so you will need to stay focused on what is most important at this time: easing the patient’s passing in whatever way you can while coping with your own and others’ intense emotions and challenges.

Your needs as a caregiver during your loved one’s palliative care period

The objective of palliative care is to treat symptoms, but not use curative or life-extending therapies.2Earle CC, Park ER, Lai B, Weeks JC, Ayanian JZ, Block S. Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol. 2003 Mar 15;21(6):1133-8.

Researchers evaluated caregivers’ psychological well-being while their loved ones were receiving palliative cancer care and found that 11 percent of caregivers experienced depression and 35 percent experienced anxiety.3Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.

Another challenge that caregivers for people with cancer may encounter is keeping a job. Researchers evaluated the impact of caregiving on work during the time when cancer patients were receiving palliative care, and 53 percent of the caregivers missed work during this time.3Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.

What solutions to these challenges are available to caregivers during this time?

Counseling has demonstrated effectiveness for reducing anxiety and depression.4, Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psychooncology. 2013 Mar;22(3):555-63.5Badger T, Segrin C, Dorros SM, Meek P, Lopez AM. Depression and anxiety in women with breast cancer and their partners. Nurs Res. 2007 Jan-Feb;56(1):44-53. If you have limited time availability, counseling by phone can also reduce anxiety and depression.4, Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psychooncology. 2013 Mar;22(3):555-63.5Badger T, Segrin C, Dorros SM, Meek P, Lopez AM. Depression and anxiety in women with breast cancer and their partners. Nurs Res. 2007 Jan-Feb;56(1):44-53.

If you need time off from work but wish to keep your job, find out if you qualify for the Family and Medical Leave Act (FMLA). If the person you are providing care for is a family member (child, parent or partner), then you may qualify to have up to 12 weeks of unpaid leave to help with an illness.6Hoffman B. Cancer survivors at work: a generation of progress. CA Cancer J Clin. 2005 Sep-Oct;55(5):271-80. One study evaluated the impact of caregiving for cancer patients during the palliative care period and found that each caregiver who participated in the research kept his or her job and did not need to seek new employment.

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End-of-life decisions and paperwork

By taking care of your needs, you can provide support and help your loved one make the best possible end-of-life medical decisions. It can be very helpful to the person with cancer for you to gather and prepare the paperwork that will communicate his or her end-of-life wishes about medical care as well as legal and financial issues to you, the family and health care providers.

Managing visitors

Another role the primary caregiver typically plays at the patient’s end of life is managing visitors. Find out whom your loved one wants to see at this time and try to arrange visits if possible. You may need to help your loved one communicate final wishes and messages to others. Gauge the patient’s energy level and ability to communicate to help decide who can visit and when it is appropriate for them to do so. At some point, you may wish to end visits from those outside the closest circle of family and friends. This is acceptable to do, and you should not feel guilty if this is what is best for the patient and the family.


References

1 Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012 Apr 10;30(11):1227-34.

2 Earle CC, Park ER, Lai B, Weeks JC, Ayanian JZ, Block S. Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol. 2003 Mar 15;21(6):1133-8.

3 Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.

4 Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psychooncology. 2013 Mar;22(3):555-63.

5 Badger T, Segrin C, Dorros SM, Meek P, Lopez AM. Depression and anxiety in women with breast cancer and their partners. Nurs Res. 2007 Jan-Feb;56(1):44-53.

6 Hoffman B. Cancer survivors at work: a generation of progress. CA Cancer J Clin. 2005 Sep-Oct;55(5):271-80.