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Caregiving Resources

Options at the End of Life

While we all must die at some time, we can have some say in the manner of our dying, and in how we leave this life. We can find ways to minimize pain and suffering, and to maximize those things in life that are most significant to us.

Important things to consider are:

  • Palliative care
  • Hospice care
  • Communicating with loved ones, caregivers, and health care (including using Advance Care Directives)
  • Medical procedures at the end of life

Palliative Care

What is meant by the phrase "palliative care"? Medline Plus defines it as:

treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... it can also help you deal with the side effects of the medical treatments you're receiving. Hospice care, care at the end of life, [should] always include palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.

 

Unsure? This short quiz to help decide whether palliative care would be a good choice: 

 

Medline Plus has a good collection of more information resources about palliatiive care, including material in Arabic, Chinese, French, Haitian Kreyol, Hindi, Korean, Polish, Russian, Spanish, and Vietnamese.

 

Pain control is a major part of palliative care. While the download-able booklets from the National Cancer Institute linked below focus on cancer pain, their information may be very useful for managing pain from other causes.

Another important part of palliative care is managing the side effects of medical treatments. The webpages from the American Society of Clinical Oncology linked below describe some of the most common side effects, and most commonly-used methods for their management. The other resources talk about fatigue and depression (both common side-effects of pain) and how palliative care can help manage those.

But there may also be special considerations for palliative care, depending on illness.

Palliative care for children can involve the whole family, and has other considerations. The Resources and Frequently-Asked Questions webpage  from the National Institute of Nursing Research has much useful information. Its section For Patients and Families has print-able guides on Support for the Whole Family when your Child is Living with a Serious Illness (in English and in Spanish) and videos in both languages.

Hospice Care

What is hospice care? Medline Plus gives this definintion:

Hospice care is end-of-life care. A team of health care professionals and volunteers provides it. They give medical, psychological, and spiritual support. The goal of the care is to help people who are dying have peace, comfort, and dignity. The caregivers try to control pain and other symptoms so a person can remain as alert and comfortable as possible. Hospice programs also provide services to support a patient's family.

 

So unlike palliative care (which can be appropriate at any time), hospice care is when someone has a terminal diagnosis. The source below includes a table with the differences between hospice care and palliative care:

Hospice care is usually a team effort. The Mayo Clinic guide linked below explains the key team members and how they work together.

 
Hospice care can take place at home, or in a medical setting. The Joint Commission offers a guide to help decide:

In some cases, the greatest advantage of hospice care is that it can allow someone to end their days in a familiar location.

However, if it will provide greater comfort to the patient, hospice can take place in a medical facility or care home that has health care resources available 24/7.

Hospice and end-of-life care for children can be especially tragic, and should support the whole family. The organization Kids' Health has information on end-of-life care for children with a terminal illness.

To Think About

Healthcare providers may need to know if we want a life-prolonging procedure (like CPR, ventilators, or intubation) - but many of us are unfamiliar with them, and may not know what choosing that procedure actually means for us. Depending on a patient's condition, a procedure may not have a high chance of succeeding, or could bring greater pain or disability afterwards. There may be unexpected complications, also. These resources explain in more detail about artificial nutrition (tube feeding), hydration (liquids), breathing machines, and CPR. (The End of Life Care Resources in Other Languages from Coalition on Compassionate Care of California includes links to download a  .pdf on those topics in English, Spanish, and Chinese.)

Towards the end of life, people often have more than one medical issue at the same time. Managing multiple health problems can be complex, and/or there may be questions about performing screening tests for other health problems. These two guides from Health in Aging may help.

If your loved one is experiencing memory issues or dementia along with another disease, end of life care can be complex; these guides give useful advice:

 

California has a version of "death with dignity" in the End of Life Options Act that took effect in 2016. Only CA residents over 18, able to make and communicate decisions, and with a terminal diagnosis in the last six months of life qualify. There are also many other limits and reporting requirements for physician-assisted suicide to be legal in this state, as explained in these articles:

Final Days and Afterwards

How can we know when a loved one has reached their final days – and what can you do to ease them? These sources may be helpful.

A member of the health care team might ask about organ donation after death, should that be possible. For more information specific to California, see:

 

If there are questions about California regulations around burials, cremations, and funerals, or other legal matters at the time of death, these resources may give answers:

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