Advanced Care Plans: Part 2

Advance Care Plans can be overwhelming and all too often people have chosen to do nothing. Then you won’t get what you had hoped. 

Remember that the medical team is doing what they think is best, and their goal is to treat. The patient always has the right to make decisions about care and to have those decisions honored. 

What we have found, especially in those states with End-of-Life Options or Death with Dignity laws, is that more patients are discussing end-of-life issues with their families and with their doctors. 

It is not the paper that is making and ensuring quality of life, it is the people and their voices, whether it is your surrogate/advocate, or your family that is making the decision and voicing your desires. 

The more often you speak your wishes, especially to your family, the more your wishes will be heard. Have these discussions frequently with both your designated surrogate/advocate and your family, at least every year. Choose a regular time such as near your birthday, the anniversary of your diagnosis, or especially if there is a change in diagnosis or life cycle. Review your plan, sign it again and add something like, “I wholeheartedly agree with this plan.” Good outcomes come from good planning and good discussion. Good conversations occur many times, and may even change as you age, or your condition or diagnosis changes get heard. These talks will leave an impression on your loved ones. 

The surrogate (or advocate or health care proxy) does not have to be a family member. In fact, if all your family is in another city, consider having someone who lives close by and choose a family member as a backup. You can also name who you do not want to make decisions. Ahead of appointing someone, it helps to discuss what you need. Can you discuss sensitive issues with them? Can they handle conflict within your family and friends, and can they stand up to a difficult clinician or institution? Can they speak for you and separate their own feelings on an issue? Remember, you are giving them a great deal of responsibilities to manage. Be sure that you have discussed and documented your wishes and made copies for others. 

If you have a chronic or progressive condition, consider having a Physician Orders for Life Sustaining Treatment (POLST) polst.org. It is a medical order signed by your doctor that expresses your wishes about several medical interventions. The document can travel with you, and it describes interventions beyond just a “Do Not Resuscitate” (DNR) order. The primary difference between POLST and DNR is that a POLST covers a wider variety of end-of-life interventions. It is a form that is meant to be filled out together with your doctor so there are clear instructions on feeding tubes, intubation, antibiotics and CPR. We would expect EMTs and clinicians in an Emergency Room to honor a POLST and its instructions or at the very least contact the signing physician. A DNR order only gives instructions about CPR.

Even though there are studies casting doubt about how well Advance Care Plans improve end-of-life care, there are things you can and should put in place to help ensure that your wishes will be honored. Have a trusted surrogate or health proxy (and a spare) and talk to them often about what you want and don’t want. Make the video we discussed in last month’s article and share it. Update your plans, let your family know you have them, sign, and date them each year and let them know you still whole-heartedly support and agree with the plan. There are several cloud sharing or safe Internet places to save your plan that any hospital can reach. Resources are listed at the end of this article. 

If you have a POLST, there are addendums about dementia or Covid-19 to include if you think it might apply to you. At least discuss these with your doctor. The more you share the more you will have the support you are seeking. 

What Not To Do – If you are close to someone with a chronic illness; a close friend or family member, and even if you have some medical knowledge, it does not matter what you know or that what you think… do not suggest it. At end-of-life the only good suggestions and comments are encouragement. You should be supporting their plan, and then just show your love and care for that person. 

People ask what can I do? What can I say? Do not suggest what they should be doing. They have looked at and researched it all and if they know you are knowledgeable, they will ask you for your opinion. Otherwise keep your suggestions to yourself. If they have decided to stay at home, go on hospice, and forgo further treatments, they have made their decision and it is their right to make this choice. 

It will mean the most to your friend/family when you can support their choices even if it is not what you would do. If you can’t support their decisions, stay away or say nothing. Being present and sitting with someone is a great deal of comfort and affirmation. 

The last key to having your end-of-life wishes honored is surrounding yourself with those who support you and your wishes. Remember, talking about death does not make it happen, but having a plan and giving your family instructions on what you want and don’t want at end-of-life will be a gift that brings everyone peace... Peace knowing that they were able to give you exactly the death you desired at end-of-life .

“A good death does honour to a whole life.”

— Petrarach

Resources:

Compassion & Choices (California page)

Advance Healthcare Directive: California Probate Code section 4701.

Dementia Directive by C&C 

California Form To Request Medical Aid In Dying

California POLST Forms

Karen Morin, R.N. is the owner of LA Patient Advocates and has been a member of PRO’s Wellness Village since June 2021.

Her business is in Encino, California.