Decisions for End of Life
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Decisions for End of Life
When you are chosen to make decisions for a loved one in hospice, it can be overwhelming. Emotions can take over and make it even more difficult. When we think about the future we never plan to be in hospice or have a loved one that is. It is always important to speak to your loved ones about their wishes.
These wishes also include their care before they pass. Many times patients will have a will with information on where their belongings go and how they want to be celebrated. What is not often talked about are whether life-altering medical conditions were to come up, and deciding on the next steps to treat them.
There are two approaches that might be useful when you encounter decisions that have not been addressed in a person’s advance care plan or in previous conversations with them. One is to put yourself in the place of the person who is dying and try to choose as they would. This is called substituted judgment. Some experts believe that decisions should be based on substituted judgment whenever possible. Another approach, known as best interests, is to decide what you as their representative think is best for the dying person. This is sometimes combined with substituted judgment.
If you are making decisions without specific guidance from the dying person, you will need as much information as possible to help guide your actions. You might ask their healthcare provider:
What might we expect to happen in the next few hours, days, or weeks if we continue our current course of treatment?
Will treatment provide more quality time with family and friends?
What if we don’t want the treatment offered? What happens then?
What medicines will be given to help manage pain and other symptoms? What are the possible side effects?
What will happen if our family member stops eating or drinking? Will a feeding tube be considered? What are the benefits and risks?
If we try using the ventilator to help with breathing and decide to stop, how will that be done?
Remember that the medical team in your loved one's hospice care is there to aid you as well as the patient. Our CCH staff is available around-the-clock to consult with caregivers. The hospice team consists of specially trained nurses, social workers, chaplains/spiritual care coordinators, home health aides, and volunteers. These team members provide both patients and their families with education, pain management, symptom control, emotional and spiritual support and grief support. Of course, they cannot make difficult or intimate decisions for you, but they can provide detailed medical information and answer any questions that will help you make an educated and informed decision on what you feel will be best for your loved one.
Having a care plan in place at the end of life is important in ensuring the person’s wishes are respected as much as possible. A care plan summarizes a person’s health conditions, medications, health care providers, emergency contacts, end-of-life care wishes, such as advance directives, and other decisions. A care plan may also include your loved one’s wishes after they die, such as funeral arrangements and what will be done with their body. It’s not uncommon for the entire family to want to be involved in a person’s care plan at the end of life. Maybe that is part of your family’s cultural tradition. Or, maybe the person dying did not pick a person to make health care choices before becoming unable to do so, which is also not unusual.
If one family member is named as the decision-maker, it is a good idea, as much as possible, to have family agreement about the care plan. If family members can’t agree on end-of-life care or they disagree with the doctor, your family might consider working with a mediator. A mediator is a professional trained to bring people with different opinions to a common decision. Clinicians trained in palliative care often conduct family meetings to help address disagreements around health care decisions.
Regardless, your family should try to discuss the end-of-life care they want with the healthcare team. In most cases, it’s helpful for the care team to have one person as the main point of contact.
Here are some questions you might want to ask the care team when making decisions about a care plan:
What is the best place — such as a hospital, facility, or at home — to get the type of care the dying person wants?
What decisions should be included in our care plan? What are the benefits and risks of these decisions?
How often should we reassess the care plan?
What is the best way for our family to work with the care team?
How can I ensure I get a daily update on my family member’s condition?
Will you call me if there is a change in his or her condition?
Where can we find help paying for this care?
There may be other questions that arise depending on your family’s situation. It’s important to stay in contact with the healthcare team. Hospice is not a place, it is an all-encompassing approach to the care provided in the comfort of your home or where you call home.
For more information regarding hospice services, please contact Home Health and Hospice with Campbell County Health at 307-688-6230.
Sources:
Alliance, F. C. (n.d.). Making End-of-Life Decisions: What Are Your Important Papers? Family Caregiver Alliance. https://www.caregiver.org/resource/making-end-life-decisions-what-are-your-important-papers/