Fear of the First Step: Hospice Arrangements

Posted on Jan 14, 2019

There are few words that can express the feeling of being told that you or a loved one may need to begin planning for end-of-life care. Many emotions can well up inside — confusion, defeat, anger, and depression are just a few. While we realize that no one escapes the natural rhythm of time, we all pray for a quick, unexpected, yet peaceful passing. This isn’t the case for the majority of us. Because we and so many of our family members will face our passing long before it is immediately upon us, it’s important to open lines of communication with hospice services to determine which best meets your needs — even before their services are immediately necessary.

Talking Logistics is Not Giving Up On Hope

Speaking to car insurance agents about policies doesn’t make us apprehensive about riding in automobiles. Buying fire damage insurance doesn’t make us increasingly wary of lighting candles around the house. Why then would making arrangements for hospice care make us feel that we’re inviting death into our homes? Part of the reason for this is because, while there is a possibility of going through life without a single car accident or house fire, you will eventually pass away. Speaking to hospice care representatives, especially as your health or the health of a loved one deteriorates, can feel like giving up on life. This is probably the single biggest myth about hospice care. Talking to hospice is not waving a white flag, but instead planning for that which no one can avoid.

The Comfort of Knowing

Many have reported scenes where they were given the hardest pill to swallow — that it would be a good idea to start making arrangements for end-of-life care, but that they felt immediate relief from many of their anxieties upon meeting with hospice care representatives. If this is your situation, do not despair. Do you know who also needs to make arrangements for end-of-life care? Absolutely everyone. There is not a soul alive who shouldn’t be making the right arrangements for their care towards the end of life. On the other side of this coin, those who pulled the trigger on speaking with hospice care representatives actually felt much more at ease about their fate or the fate of their loved ones. The comfort of knowing that they or their loved ones would be receiving the utmost quality care was one less thing to worry about. This comfort can be yours as well.

Advance Directives: Not Just For End-Stage

Posted on Jan 02, 2019

It can be uncomfortable to even think about worse-case scenarios, let alone talk about them with those closest to you. As uncomfortable as we may feel, life’s ups and downs will occur regardless of our feelings. In order to make sure that your wishes are being met, regardless of your ability to communicate, a legal Advance Directive is the best route — and not just for end-stage patients.

What is an Advance Directive?

Most of us are familiar with a will — a legal document declaring what will be done with your earthly possessions in the event of your demise. In that similar vein, an Advance Directive is a legal document that spells out what kind of medical treatment you’d prefer to receive or not receive in the event that you are incapacitated and physically unable to make such requests.

Power of Attorney vs Advance Directive

One way we like to deflect planning for the worst is by placing this responsibility on whoever has our Power of Attorney. Someone you have given Power of Attorney is typically someone close to you whom you’ve selected to make major legal decisions on your behalf. While issuing someone to be your Power of Attorney is helpful in many situations, there can be complications with placing all of the decisions on their shoulders in the event of an unfortunate event. While you may be in a lucid and calm state right now, in the event that you unable to physically communicate, your Power of Attorney may make hasty or irrational decisions using their emotions in place of what you would have wanted. Another downside to placing that level of responsibility on your Power of Attorney also means you’re saddling them with the grief and doubt of trying to determine what care you would have wanted. Wondering if they made the right decision may be an immense burden that they carry the rest of their lives.

Advance Directives For Everyone

Most able-bodied individuals do not have an Advance Directive. A lack of an Advance Directive can be a major issue in the unfortunate event that they are incapacitated and important legal and medical decisions need to be made. Even if someone has Power of Attorney to make the necessary decisions, their choices, no matter how well-intentioned, can cause strife within friends and family members who do not agree with their decisions. If someone has an Advance Directive, there’s no one to be upset with because the subject’s wishes are the ones being carried out. Because unfortunate incidents happen every day ranging from car wrecks to brain aneurysms to getting hit with NASA space debris, planning for what kind of treatment to receive or not receive can help lift the burden of the mystery of knowing what kind of treatment you would have wanted.

Each state’s laws for Advance Directives differ, but here is a copy of a blank Oklahoma Advance Directive.

Learning How to Live Through the Process of Dying

Posted on Dec 20, 2018

“‘Everybody knows they’re going to die, but nobody believes it. If we did, we would do things differently,’ Morrie said. ‘So we kid ourselves about death,’ I (Mitch) said. ‘Yes, but there’s a better approach. To know you’re going to die and be prepared for it at any time. That’s better. That way you can actually be more involved in your life while you’re living. . . Every day, have a little bird on your shoulder that asks, ‘Is today the day? Am I ready? Am I doing all I need to do? Am I being the person I want to be?... The truth is, Mitch, once you learn how to die, you learn how to live… Most of us walk around as if we’re sleepwalking. We really don’t experience the world fully because we’re half asleep, doing things we automatically think we have to do… Learn how to die, and you learn how to live.’”—Tuesdays with Morrie

It’s hard to say what can be considered more worrisome, death or dying. For many questioned, the greatest source of despair was not their impending demise, but instead, regret —  that they had not yet accomplished what they wanted to do, usually because of some fault of their own.

According to one Quora user in a forum on the subject, their patient had this to say about the sensation: “It is a bittersweet thing to know you are going to die soon. Bitter, because of everything that you wanted to do, but for one reason or another, you didn't. Bitter because there are burned bridges that can never be rebuilt. Sweet because you know the pain is going to end. The daily suffering is almost over. The emotional turmoil is getting close to being done. Sweet because the people that you were arguing with, you make up with. Sweet because whatever afterlife you believe in, or don't believe in, you know and can't wait to get there.”

Being given notice that your departure from this world will be sooner than you thought can bring a whole new perspective, as the legendary Morrie stated above. Not only does hospice care provide the physical support needed by those nearing the end of their lives, but the emotional support of those navigating the inner process of those who can see the finish line.

Common Misconception: Hospice Is About Death

Posted on Dec 20, 2018

Most people don’t want to talk about hospice. For many, hearing the word “hospice” is equated with death — a concept that gives many the willies. Even though there shouldn’t be anything inherently disconcerting about death as it’s something we will all eventually experience, the fear and discomfort with the topic endures. While this is the case, fear and anxiety should not be correlated with hospice care.

While the death of patients is something that typically occurs in the process, hospice care is about making the most of the quality of the rest of our lives. If you one were to remove the cultural stigma and connotation of hospice as “the caretakers of the dying” and instead thought of it as “the comfort enhancers of the those very much alive,” who wouldn’t want hospice care at any stage of life? Hospice specialists are caretakers of the dying, yes, but they are not caretakers of the dead. Hospice workers are not angels of death. Instead, every hospice professional is dedicated to improving the quality of life for all of their patients much in the same way we care for the vulnerable of whom we cherish — no matter how far from death they appear.

In order to ensure the highest quality of care for our loved ones, it is high time we squashed the misconception that hospice is about death. Death is not the focus of hospice specialists, but instead the comfort and joy of the living. Hospice is not about defeat, but rather about relief from the struggle. Hospice is not about counting down to the moment of one’s demise but rather embracing the new chapter of living — which many have said is one of the most vibrant stages of their lives. Hospice care is not about sympathetic coddling, but rather about helping to navigate the feelings of experiences yet to be had. Hospice is not about death, but rather about enhanced living.

How To Talk To Someone Who Is Dying

Posted on Nov 14, 2018

Whether you’re a palliative care professional or close family member to someone who is nearing the end of their life, knowing what to say to someone who is dying can feel like a delicate and confusing tightrope walk. While our natural instinct is to soften the tone of our language to cushion them through the process, the opposite fear is being disingenuous with our words and ignoring the elephant in the room. In this piece, we’re going to explore how to speak to someone who is dying in a way that is supportive as well as sincere.

Remember That This Isn’t About You

When speaking with a person who is dying, we have the tendency to let our own thoughts and feelings guide our speech and even to make us feel the need to speak at all. In many instances, letting the individual guide the conversation is the key to the most supportive conversation you can have. If they want to know how you are feeling, they will typically ask, but remember that just because they don’t ask doesn’t mean they don’t care. This situation isn’t about you so it’s best to be a helpful passenger in the conversation rather than a backseat driver.

Never Speak To Someone Or About Someone As Though They’re Already Gone

Unless you work in hospice care or in some avenue of palliative care, we typically don’t interact with dying people that much. This lack of experience can make us emotionally combine the process of dying with the process of grieving a death. While grieving may begin even upon discovering that someone is dying, the language associated with grieving their death has a time and a place — after they’ve passed away. Offering sympathies to the families of someone who is dying or even carrying such a tone when speaking to dying is generally not helpful, if not insensitive to their current needs. While there is still time that can be spent with the person, it should be spent helping them in whatever capacity they need — physically, emotionally, or spiritually.

Feel Free To Dive Into Positive Memories

Our memories are our most prized possessions. When speaking with someone who is dying, if the conversation is flowing, feel free to ask them questions about some of their favorite memories. Ask them about their favorite people and the specific moments they have spent with them. Ask them if they have any particularly funny stories about these people. Ask them what details they love the most about their loved ones. Their answers can be tremendous mood lifters and distractions from hardships. This line of conversation comes with a disclaimer: Though memories can be great conversation starters, it is typically recommended to avoid asking them to recall specific memories that can either end up being painful or if illness or old age have made recalling memories difficult and therefore frustrating.

Don’t Offer Any False Assurances

Coming to terms with the idea of dying is a process unto itself, which makes the act of making false promises or assurances a step backward in the process for the dying. Though our gut reaction tells us that some words of hope may brighten a dying person’s day, the truth is that these false assurances only damage our trust with the individual. They know they are dying and they typically don’t appreciate being lied to. Be willing to talk about the elephant in room if they want to, but don’t make it any heavier with false hopes.

Don’t Be Afraid To Make Peace & Offer Thanks

Though we should make sure to remember that their dying process is not about us, if something we need to say will bring comfort to the dying, it is ok for it to be said. One area that feels negative but can ultimately be positive is asking for the forgiveness of a dying person for any wrong you’ve committed against them or hardship you’ve caused. While it may feel that asking of forgiveness may set a negative tone, asking for forgiveness frequently brings about feelings of reconciliation — a positive occurrence. And even though it may sting of finality, it is ok to thank the dying individual for the positive impact they’ve had on your life. Mentioning specific acts of kindness or ways they have helped you may be a great way to share some positive memories. Hearing specific details about your gratitude may leave the dying feeling better about the positive impact they’ve had on the world as well as the joyous moments you’ve shared.

Sometimes, There’s No Need To Speak

Nobody likes an awkward silence, but an awkward rambling of unguided, unproductive speech can be as equally uncomfortable. In many instances, a dying person, as well as grieving person, doesn’t need you to speak — they just need you to be there. A great approach can be to let the dying or grieving person initiate and steer the conversation. Lend your thoughts to keep the conversation going so they don’t feel like they’re speaking to a wall. In all things, be a helpful passenger on their journey.