If you have a loved one in end of life care in Alameda County and elsewhere, you know how fraught with emotion this time is. You’re essentially in crisis mode, trying to work through logistics, care plans, and schedules all while juggling intense emotions as you realize you will soon lose your parent, spouse or other loved one. Making difficult end of life decisions can be compounded during times of crisis, which is why it’s best to get the plans started well before the urgency hits. From coordinating hospice care to looking ahead to funeral and burial plans, these are very tough decisions you’re faced with, and it never seems like time is on your side.
When someone is diagnosed with a life-threatening illness, their reactions to the news, the decisions they make, and what influences their decisions are not based just on medical facts, benefits, and risks. Those facts have to be taken into account, to be sure, but the ways in which we interpret them and the importance we place on various benefits and risks are all very personal. After the shock of initially hearing the prognosis of serious illness and resulting end of life care, patients and families are faced with extremely difficult decisions. Patients want to know how various treatment options would improve their quality of life for the time they have left, and how those options will allow them to achieve their goals.
Through the exploration of what patients expect or hope for, treatment options, along with their benefits and risks, can be talked about within the context of these expectations and hopes. It’s the job of the physician to inform patients of their prognosis without giving false hope and to assist patients in choosing what palliative or hospice care options are best for them. This way, doctors can show respect for the dignity and self-worth of the patient, showing that they care about the patient as a unique person.
But what about the patient himself or herself? What about the family members? How can they make those tough end of life decisions in times of crisis? What if the patient is no longer able to voice his or her opinions about what is to happen?
Taking the Next Steps
These types of plans are all too often left up in the air until times of crisis strike or the patient can no longer communicate their wishes, or advance planning documents are unclear. When this occurs, crisis mode kicks in and suddenly everything gets put into high gear. Spouses, siblings, and adult children suddenly have to take on the role of being surrogate decision-makers. They are suddenly expected to not only make sense of it all but make very important decisions — oftentimes with few facts and under extremely emotional circumstances. They essentially have to think about what their loved one would have chosen to do if they had the chance.
The most effective surrogates are ones who aren’t scared to ask lots of questions of hospice care staff and doctors, such as:
- What are the benefits and burdens of the decisions we make?
- Are there other options to choose from?
- Will they cause a lot of pain for our loved one?
Thing is, you don’t want to have to make rushed decisions and judgments if you can figure all those out beforehand during calmer times.
What to Avoid When Planning Ahead
It’s certainly better to make plans when things are not at critical mass yet. But there are some pitfalls to avoid.
- Putting it off for a later time: A survey conducted by The Conversation Projects showed many people have delayed completion of advance directives because it’s simply too early to think about these things, or that they or their loved ones are not sick yet. However, the evidence shows that making decisions about end-of-life care is infinitely tougher during a crisis situation. On top of that, many preferences of the patient, such as DNR (Do Not Resuscitate), may be impossible if they are not put in writing before the emergency takes place.
- Getting lost in the details: When you decide to plan ahead for future health care decisions, you may quickly get overwhelmed with all the thousands of potential scenarios that may occur at the end of your life. Rather than spend months getting lost in all the details, ask yourself some big picture questions such as: “How do I want things to be like when I am nearing the end of my life?” Start at the end, and you can always work backward. In this regard, other decisions will become clear. For example, wanting to be in your own home when dying is a big decision. You need to put this in writing well beforehand so you can avoid the treatment types that may require hospitalization throughout your final days.
- Failing to share your wishes with your loved one: The same survey cited above showed that although 90 percent of Americans think it’s critical to discuss their end-of-life wishes with family members, fewer than 30 percent actually conducted those conversations. This lack of information often leads to stress and anxiety for loved ones at the time of death because they’re suddenly forced to make tough decisions without basis. Even worse, sometimes, each family member has been told something different at one point or another by the patient, and those all come out at the end. This adds another layer of distress for family members because on top of dealing with the emotions of losing their sibling, spouse, or parent, they are arguing with one another. Plan out time well in advance to talk to the inner circle members of your family. Tell them your healthcare decisions, all at once, so everyone gets the exact same information. Provide a copy of your advance directive to each family member and go over it so everyone understands what your decision is and why you made it.
Contact Pathways Home Health and Hospice
To learn more about how we can ease the hospice process for your loved one, contact us at 888-978-1306.
