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Death and Dying

Bedside GriefEmotions at the end of life are very difficult for other people to completely understand. You may find it challenging to fully come to terms with what is happening, and it is normal to feel “numb,” angry, grief-stricken, melancholy, desperate, fearful, resigned, at peace or any number of other emotions. You may find that your emotions overlap or shift rapidly during this time as well.

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During your final weeks or days, your care team will help you maintain the best possible quality of life so you can make the most of your remaining time in the way that suits you best. Much of the pain from advanced cancer and many of its symptoms can be managed through palliative or hospice care, so it’s important to know that every effort will be made to keep you comfortable.

However, you should note that only 37 percent of cancer patients report having detailed end-of-life planning discussions with their physicians.1 Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300. 2008;(14):1665-1673. If your care team does not bring up this topic, you should do so—the earlier, the better. People who communicate their wishes very clearly to their care team and families have higher quality of life, more comfortable arrangements of their own choosing and lower costs of care.2 Seow H, Barbera L, Sutradhar R, et al. Trajectory of performance status and symptom scores for patients with cancer during the last six months of life. J Clin Oncol. 2011;29(9):1151-1158. These can all help you and your family to better cope with the process of dying.

Getting your affairs in order

While you are still able to think clearly, make legal decisions and get your paperwork in order so that your end-of-life wishes can be easily followed. A social worker or attorney can help you with these tasks, which might include a do-not-resuscitate (DNR) order, advance care directives, a living will, durable power of attorney for your primary caregiver, funeral arrangements and a will.3 End of life issues. MedlinePlus. http://www.nlm.nih.gov/medlineplus/endoflifeissues.html. It is a kindness to your loved ones to put these items in order so that they do not have to wonder what you would have wanted or struggle with legal issues when they are grieving. Making your own decisions and arrangements can also help you feel more in control of your situation and might bring you and your family some peace. Note also that as your pain increases, the medications used to control your pain will make you less able to make decisions and spend conscious time with your loved ones. Try to plan as well as you are able to with this in mind.

Choosing where you want to die

Consider what kind of surroundings you’d like in your final hours. Would you prefer to be in a hospital setting or at home? In a hospice center or a nursing facility? Who would you like to have visit you or be beside you at the end? Where you are and who is with you can have a profound impact on your and your loved ones’ emotional well-being. A comfortable setting that suits your needs and effectively manages your pain and other symptoms can ease your passing and help your loved ones to better cope with their loss and grief.4 Finding care at the end of life. National Institute on Aging. http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/finding-care-end-life.

Coping with your emotions

Your emotions and your family’s emotions are likely to be intense, volatile and difficult to manage during this time. When you are up to it, try to spend time with your family and friends. Seeing them will help you feel less isolated and give you the opportunity to tell them how important they have been in your life. You may also wish to give attention to certain relationships. Sharing your love and making amends for past wrongs can bring some comfort at a time when it is difficult to come by.

By the same token, if you do not wish to see people and would rather spend your time alone or with just your closest family members, that is okay as well.

It’s normal to find yourself thinking a lot about the past, as well as the future, and find yourself feeling angry, questioning your faith or grieving for the experiences you will never have. Writing letters to people close to you, creating a memoir or even recording messages to be passed on to family members after your passing, may help you feel that your life has meaning and you can still make a difference when you’re gone.

Saying goodbye is very sad and emotional, but these small preparations can also be satisfying as they can help you think about the events in your life, both good and bad. The most important thing is to do what is right for you.

I never felt or thought about death, just working towards a cure. Barry J. (tongue cancer survivor)

References

1 Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300. 2008;(14):1665-1673.

2 Seow H, Barbera L, Sutradhar R, et al. Trajectory of performance status and symptom scores for patients with cancer during the last six months of life. J Clin Oncol. 2011;29(9):1151-1158.

3 End of life issues. MedlinePlus. http://www.nlm.nih.gov/medlineplus/endoflifeissues.html.

4 Finding care at the end of life. National Institute on Aging. http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/finding-care-end-life.