Often, the hardest decision involving end-of-life care is the decision to begin hospice. However, many other decisions will play a role in the process, many of which will have a direct impact on a patient’s life. Some of these decisions are seemingly minor but can have profound repercussions. Others are weighty choices that require deliberation and careful thought.
We understand how critical it is that patients and their family members and caregivers have access to accurate information to inform their decision-making process. This post will explore some of the many decisions that must be made while a patient is receiving hospice care.
Do You Want to Discontinue Curative Care?
This question should be asked and answered before entering hospice care. It can be difficult to answer honestly, and it is normal to have mixed emotions about it. Many people often decide one thing and then change their mind again, and then possibly change it again.
To enter hospice, the patient should decide no longer to pursue curative treatment. If the patient desired curative treatment, then hospice is not the right path. Instead, they should consider palliative care in their home or a hospital setting. Once on hospice, no further curative treatments will be provided, as the focus here is comfort and quality of life.
Do You Want to Receive Artificial Nutrition and Hydration?
This question is asking whether the patient (or the patient’s family members) wants a feeding tube and/or intravenous fluids delivered. This is done when the patient can no longer take solid food or hydrate themselves. Often, patients receiving IV fluids or with a feeding tube are not responsive. This is a deeply personal question – food and fluids will keep the patient’s body alive, but the quality of life must be weighed here.
Do You Want to Sign a DNR?
A DNR, or do not resuscitate order, is a legal document that states if the patient’s heart stops beating, they are to be left alone. Without a DNR or other direction regarding the patient’s wishes, medical personnel must attempt to resuscitate, usually through CPR. Many patients choose to sign a DNR so that when their heart naturally stops, the death cycle continues. This question should be discussed with family members, and consideration should be made about the patient’s quality of life if resuscitation is successful.
Do You Want Mechanical Ventilation to Be an Option?
Mechanical ventilation, also called intubation, is an option used to help people whose lungs have stopped working continue breathing. Sometimes, ventilation is provided without regard for things like brain function or the ultimate quality of life. Many patients prefer not to have mechanical ventilation provided in the event their lungs stop working so that the death cycle can continue naturally. This is another question that bears deep thought and should be discussed with family members before making a decision.
Ensuring Your Wishes Are Followed
The questions above are some of the weightiest matters you will need to consider when entering hospice care. It is not uncommon for patients and family members to be at odds here, either. For instance, the patient may not want resuscitation or intubation, but family members mistakenly believe that keeping the patient alive despite all costs is the best decision.
Because hospice care is ultimately about the patient’s life and nothing else, it is their right to decide what they want provided or not provided when it comes to life-saving services while on hospice. However, the challenge is that if a patient becomes unable to make decisions for themselves during hospice care, there is a chance that well-meaning family members will make a different decision.
For patients, it is critical to follow specific steps to ensure that their wishes are followed. These steps include:
- Talk with your family members and discuss your end-of-life plans. Make sure they know your wishes when it comes to the questions above.
- Talk with your doctor about these treatments and make sure you fully understand what is being discussed before deciding anything.
- Create an advance directive that details your wishes. Your directive should include two components:
- Your Living Will – Your living will sets out your wishes in terms of treatments and care to be provided (or not provided).
- Power of Attorney – Your power of attorney designates an individual to speak with your voice when it comes to care decisions, enabling them to ensure your living will is followed.
Without an advance directive, there is no guarantee that your wishes will be followed. Planning for hospice can be challenging and confusing. If you or a loved one are considering hospice care, contact us for more information about what to expect and the process, including advance directives, living wills, and powers of attorney.