Support for Patients, Family Members, and Caregivers
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End of Life Decisions

While some patients defy the odds and live well beyond the life expectancy for advanced-stage mesothelioma, all patients should consider end-of-life planning and other important decisions.

In some cases, your doctor has told you that your mesothelioma has advanced so much that it cannot be treated. In other cases, you have opted out of last-ditch aggressive treatments. Either way, planning will help you and your family take control of these last months of life. Even though you have been diagnosed with mesothelioma, your whole family is alongside you to help.

Talk About It

One of the biggest mistakes that families and patients do is not talk about the end of life. Initially, it may not be a comfortable conversation to begin but it will be helpful to everyone involved. As both a patient and family member, it’s important to share your hopes, dreams, goals, expectations and concerns through this time. There are so many emotions that both the patient and the family members experience:

  • Grief -- With impending death, both the patient and the family feel grief, whether the illness was short or long term. Talk to each other about the grief and the feelings that come with it.
  • Regret and Guilt -- These can be common feelings for both the family members and the patients for both things said and done and things not said and done. Sometimes the best thing to do is just let your regret and guilt go and let your loved one know you’ve done such.
  • Depression and Anxiety -- Both are normal feelings when dealing with death. Counseling and medications can help alleviate these feelings so the lines of communication can be better opened.

Advanced Directives

Another key part of end-of-life decisions involves advance directives, which are legal documentations that state the patient’s desires for care. There are several kinds:

Living Will

This legal document indicates what kind of medical care that patients want when they are unable to communicate on their own. These include do not resuscitate (DNR) orders, which instructs health care practitioners to not use cardiopulmonary resuscitation (CPR) if the patient stops breathing. It also gives directions on the use of a feeding tube, withholding fluid and foods and the use of life-sustaining medical equipment including ventilators and respirators and organ donation.

Medical Power of Attorney

This legally allows another person to make medical decisions for the patient. This is also called a health care proxy, appointment of health care agent or durable power of attorney for health care. A medical power of attorney is not just for end-of-life decisions.

Why Are These Are So Important?

It is vital to fill out these two documents when you are healthy and can make smart choices about who will serve as power of attorney. Once this decision is made, it is important to have an open conversation with your family and friends about your decisions. Ensure that members of the patient’s health care team also know the details of the living will and advanced directive. The originals should be stored in a safe but easily accessible place. Again, make sure someone else knows where the originals are stored.

Since each state has different laws regarding these legal documents, contact an attorney or end-of-life specialist in your area. A good place to find someone with expertise in the area is your local hospice.

Palliative Care

Many patients opt for palliative care whether they are in the middle of treatment or seeking end-of-life options. Palliative care is care that focuses on relieving pain and improving the quality of life. It can also be called supportive care. There are several ways that palliative care is offered:

Hospice

Hospice care is aimed at making the patient and the family as comfortable as possible in the final stages of life. Hospice care typically commences when patients are thought to have six months or less to live, but some patients use hospice for longer. Most hospice programs provide medical assistance and emotional support while the patient is at home, but there are also private hospice care centers and hospice care in hospitals.

Home Health Care

A home health care professional can offer end-of-life support on a one-to-one basis. Home health professionals visit the patient’s home regularly, but leave a majority of the medical support to the caregiver. While this could be a good decision for the patient, sometimes caregivers get overwhelmed with the nursing responsibilities. It is best to talk to your home health agency about all of your options.

Sources:

  1. American Cancer Society. Your emotions, or what you might feel as you near the end of life. Retrieved from http://www.cancer.org/treatment/nearingtheendoflife/nearingtheendoflife/nearing-the-end-of-life-emotions
  2. National Cancer Institute at the National Institutes of Health. Advance Directives. Retrieved from http://www.cancer.gov/cancertopics/factsheet/support/advance-directives
  3. National Cancer Institute at the National Institutes of Health. “Video Eases End-Of-Life Care Discussions.” Journal of Clinical Oncology. 2009. Retrieved from http://www.cancer.gov/clinicaltrials/results/summary/2010/end-of-life-video0110
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