Facing a terminal condition or illness with a loved one is perhaps one of the more difficult journeys this life can offer. The end of life is likely something that rarely, if ever, you have discussed with a loved one in any depth. Facing the end of one’s life, whether it be years, months or days, can be fraught with a multitude of emotional decisions, and having a framework in place can make those conversations a bit easier. You may have never considered many of these care options, and having an open conversation may prove helpful for everyone involved.
Knowing what goals you and your loved one have in mind for his or her care can drive many of your decisions. Author Hank Dunn writes about the three goals in care delivery at end of life:
- Cure: Most treatment for an illness or condition initially begins with this focus.
- Stabilize: When the illness or condition cannot be cured, treatment is focused on stabilizing symptoms.
- Preparing for comfortable end-of-life care: When the illness or condition cannot be cured or stabilized, the focus is on comfort care.
At different times during the care journey, these goals may be changed, and in no particular order. They may also be combined. For instance, in end stage cancer, the patient may have end-of-life care plans in place, but also be taking antibiotics to cure a pneumonia.
PREPARING FOR THE JOURNEY
These considerations may be helpful to begin the discussion:
- Learn about the terminal illness or injury with your loved one. Speak with your loved one’s physicians and get as much information from the professionals involved in your loved one’s care. You may choose to get a second opinion in order to feel comfortable about prognosis and treatment options.
- After learning about the options, discuss them in detail with your loved one, and any other involved family/friends. Then clearly set the goals for the health care team. Goals can change as your loved one’s health status changes, so be prepared to reassess goals frequently.
- Learn about advance directives and put them in place if your loved one is ready. Advance directives are instructions patients leave for others when they are unable to make health care decisions. Health care professionals can help obtain information for your loved one on advance directives.
- If your loved one’s goal is to prepare for a comfortable death, consider asking his or her physician for a hospice referral.
- Learn about artificial hydration and nutrition. Talk with your loved one and the health care team about the potential advantages and disadvantages of the use and delivery options along with the alternatives of these care options. Your loved one can change his or her mind at any junction, but having the conversation well in advance will prepare you for the unknowns related to artificial hydration and nutrition.
- Learn about the stages of grief. People don’t always cycle through the stages in perfect order, and steps may be skipped altogether, but understanding the stages can help explain what you and your loved one are experiencing. It can help you understand and experience patience for your loved one as well as for yourself.
- Having a long, thoughtful conversation when your loved one is able will help you answer the question, “What would my loved one want?,” when he or she can no longer answer. Are the goals of care in line with his/her wishes for quality of life?
Probably the most important advice is to take it one day at a time. This can be a beautiful and meaningful journey, but it can also be stressful and more emotionally challenging than anything you have ever experienced. Reach out to friends and family to help ease the burden. You may also want to talk with a professional grief counselor if you are struggling with the journey. And, call on the professional Phoenix senior care team at Nightingale Homecare for in-home assistance throughout aging, including end of life care and support for family caregivers. We’re here for you any time and just a phone call away at (602) 504-1555.