Why is it so hard to think about and make end-of-life decisions? The biggest reason is that few people want to think about dying and the physical, emotional, and spiritual journey that dying involves.
You may have thoughts in your mind about what a “good death” is, who you want to be with you when the time comes, and where you want to be. But if you don’t indicate those end-of-life decisions in writing, there’s no guarantee that your family or healthcare providers will honor them.
Jump ahead to these sections:
- What Are End-of-Life Decisions?
- End-of-Life Decisions to Make If You or a Loved One Are Planning in Advance
- End-of-Life Decisions If You or a Loved One Are Dying
- End-of-Life Decisions If You or a Loved One Have Alzheimer’s or Dementia
Once you have started making end-of-life decisions and finalizing them in writing, you’ll feel more at peace, and so will your loved ones. Any decision you make can be changed, and in fact, it should be if your situation or thinking evolves.
Think about having this conversation on end-of-life planning if you have older parents or other loved ones who have not started the process. And you are never too young to do your own planning.
What Are End-of-Life Decisions?
End-of-life decisions may be different for someone who’s young and healthy than they are for someone who’s older or has advanced medical conditions. It’s challenging to think about yourself in the context of what could happen in the future.
You could have an accident or be diagnosed with a terminal condition tomorrow, or you might live to a ripe old age. These differences are why it’s critical to revisit your end-of-life decisions regularly. Let’s take a look at various scenarios and what you should plan for.
End-of-Life Decisions to Make If You or a Loved One Are Planning in Advance
Advanced planning is a multi-faceted process of determining who you want in charge of your healthcare and finances, and making other important decisions if you can no longer make those decisions yourself. Your inability to voice your wants and needs could be due to an accident or illness that leaves you unconscious or due to a mental condition like dementia.
For example, let’s say you’re young and healthy and you’re diagnosed with invasive cancer. It isn’t pleasant to think about something like that happening, but it does. Your decision-making process will take into account treatment options and the likelihood of survival.
At some point, you may decide that you no longer want life-extending treatments because your quality of life is more important. It’s important that your family members know your preferences and how you want your end-of-life care to proceed.
Here are some of the specific considerations you’ll want to detail in writing.
1. Life support
Regardless of age, health condition, or disability, you’ll want to indicate under what specific circumstances you do or do not want life-saving interventions.
No one can predict with certainty whether you’ll survive a life-saving intervention or whether you’ll return to the quality of life you want. That’s why making these decisions, either for yourself or a loved one, takes time and a great deal of thought.
Here are some of the specific types of life-sustaining interventions to consider.
A ventilator is a life-saving device used when a person can’t breathe on their own. The question to consider is: do you want a ventilator to be used to sustain your life indefinitely? Or should a ventilator be used for short-term use only, to get you past a medical condition and help you recover? If you’re unable to decide for yourself, how long should your medical proxy keep you on a ventilator?
Artificial nutrition is also called a feeding tube. Consider whether or not you want your medical team to use a feeding tube to keep you alive if you’re incapacitated, under what conditions, and for how long?
If your heart stops or you stop breathing, a medical professional can use CPR or a defibrillator to restart your vital body systems. Under some circumstances, however, resuscitation can’t return someone to their previous level of functioning. This often occurs if the breathing or heart rate has ceased for a longer period of time.
In your advance directive, you can indicate whether or not (and under which circumstances) you want resuscitation measures to be used.
2. Health care proxy or health care power of attorney
Maybe you’ve made your end-of-life decisions, and they’re all in writing. But healthcare situations aren’t black and white, and if you’re incapacitated, who will direct your health providers regarding your care?
Everyone over the age of 18 should have a healthcare power of attorney or healthcare proxy. Your healthcare proxy is a trusted person who carries out your wishes and makes those hard decisions on your behalf if they need to.
3. Organ and tissue donation
You may want to donate your organs and tissues, or you may oppose the idea. Either way, you need to include this in your end-of-life care and advance planning documents.
4. Funeral plans
For some, making specific funeral plans is very important. Others are not so concerned about how or when to hold a funeral.
The more significant decision might be cremation versus burial. If you do not make this end-of-life decision in advance, it could create much family stress and conflict.
5. Financial decisions
You might not think of financial decisions as being included in end-of-life decisions, but they are. Most people’s financial situations are complex and require someone to settle their estate.
The first step is to designate a financial power of attorney who has the authority to access your accounts and pay your bills after you die. You might decide to set up a trust and designate a trustee. And of course, don’t forget to write a will.
End-of-Life Decisions If You or a Loved One Are Dying
You might make end-of-life decisions well ahead of your death, when you have more time to think things over. However, if you or your loved one are nearing death and haven’t made these decisions, it’s not too late. Here are some end-of-life decisions you can make if you or a loved one are dying.
6. Palliative care or hospice
Palliative care has many of the same elements and shares a similar philosophy to hospice. But, at the end of life, you can choose one or the other. It’s not uncommon for people to opt for palliative care and then decide upon hospice when their condition worsens.
Palliative care is comfort care that allows you to continue to pursue treatment with your healthcare providers. You or a loved one could have a medical condition that may be terminal, but palliative care allows you the choice to pick and choose which interventions you want.
Hospice care is end-of-life care where a physician certifies that you have less than six months to live. By choosing hospice care, you’re forgoing any attempts at curative treatment. You agree to pain relief and comfort care. The hospice team manages your care, and you give up your primary healthcare provider and agree not to be hospitalized except under specific hospice rules.
Many families find a great deal of peace when choosing hospice. You or your loved one can change your mind at any time and withdraw from hospice if your condition improves.
7. Where you want to die
If you’re nearing the end of life, you might have preferences for where you’d like to be. If you or your loved one is in assisted living, you might prefer to be at home or with a relative as long as the family can manage your medical needs.
If you’re in the hospital and time is limited, you could go home with hospice care. Consider where you’ll feel the most comfortable.
8. Who you want to care for you
You might not immediately consider this question if you or a loved one is dying.
But you may prefer specific people to be with you at the end of your life and wish to limit visits by others. It’s up to you to make those wishes known and not worry about hurting people’s feelings. What is most important is your comfort level.
9. Spiritual considerations
Spiritual considerations may not be at the top of your mind, or you could have very concrete and specific spiritual needs. Alternatively, you may be a person who has anxiety and confusion about the end of life. If you’re in the latter category, it’s best to express yourself rather than continue to feel stressed.
If you’re in hospice care, a non-denominational chaplain is likely available to you to discuss these feelings. If you aren’t comfortable with a chaplain, reach out to others you trust and talk with them.
10. Medical aid in dying
Medical aid in dying or physician-assisted death is permitted in eight states, plus Washington, D.C.
In these locations, there are specific criteria to pursue the path. People sometimes seek this option if they have a terminal condition and have significant suffering.
End-of-Life Decisions If You or a Loved One Have Alzheimer’s or Dementia
Alzheimer’s disease and other kinds of dementia are devastating conditions that require intensive caregiving. It’s hard to predict who will get the disease and who won’t, but when dementia starts, there’s a gradual or sudden decline in functioning, eventually leading to death.
Planning is vital to the wellbeing of you or your loved one if you or they have dementia. Consider all of the advance planning we have discussed, along with these other decisions.
11. Where you want to live
Where to care for a person who has dementia is a huge decision. Most people would prefer to be cared for at home, but when family caregiving becomes too stressful or unsafe, you or your loved one may need specific dementia care. That care comes at a cost. Memory care communities can be very expensive, but so can extensive home care.
Planning end-of-life care should be based on personal preferences, but it also depends on the financial consequences of each decision. Even family caregiving can take a financial toll on the person providing the care if they leave employment or reduce their working hours.
12. When to transition into comfort care
You or a loved one may reach the point where you can no longer make rational decisions and communicate your wishes. It’s not unusual for people with dementia to suffer from significant mental impairment but be in relatively good health physically.
On the other hand, someone may be both mentally and physically impaired and continuing to decline. At what point do you want to stop treatment for medical problems and switch to hospice care?
To the best of your ability, try and express in writing under what conditions you want comfort care only. By the time your condition deteriorates, it will be too late to communicate those wishes.
Common End of Life Decisions
End-of-life planning is not a perfect process. You and your loved ones will change over time, mentally, physically, and emotionally. Starting to think about end-of-life decisions throughout those changes will give you the confidence to make your wishes known and change them when necessary.
Remember that verbally telling people what you want and when you want it has value, but you must write everything down, too. That way, your closest family and friends will know what to do when the time comes, without a doubt.