Wisdom for Dealing with End of Life Issues from a Hospice Nurse's Perspective (Part 2)

Earlier today we posted part 1 of our interview with Deborah Howard, author of Sunsets: Reflections for Life’s Final Journey. If you didn't have a chance to read part 1, check it out here. Deborah continues:

6. What's the difference between the way hospitals and hospice approach death?

In general, a hospital is going to do everything in its power to keep the patient alive—including what is known as “heroic measures.” Those include mechanical ventilation, CPR, defibrillation and emergency surgery. Back in my ICU days, when a patient started to “crash”, we immediately got the families out of the room (if it occurred during visiting hours) and called a code. Then we did everything we could to try to bring the patient back to a stable condition. A code blue is quite traumatic and, unlike attempts you see on TV, most patients still did not survive. Hospice is so different. We know our patients are not going to get better, so the goal is to keep them comfortable. Part of that comfort is allowing them to live out their last days surrounded by family and friends in the comfort of their home. And when the end comes, instead of ushering the family into another room, we call them to the bedside. By that point, we’ve taught them what to expect and what to do when it happens. It’s usually a very peaceful experience for the patient, and a quiet, though emotional, one for the family. But there’s calm, not chaos. Intimacy, not a cold, sterile environment. Hospitals are doing better these days with death. The only time they can ensure a calm passage though is when the patient/family has signed a DNR order. Do Not Resuscitate means that in those final moments, the patient has determined they do not want to be placed on a ventilator, or given CPR, defibrillated or rushed to surgery. So the doctor writes orders for comfort care, emotionally supports the family, allows them access to the patient, and tries to ensure a quiet, gentle passing. That’s why the DNR is so valuable to those who want to avoid heroics to keep them alive at any cost.

7. What are some of the myths about hospice that may be misconceptions?

One of the most prevalent is the idea that you have to actually be on your deathbed to qualify for hospice. Not true. If you have a terminal illness and are no longer seeking curative measures you will, in most cases, qualify for hospice. There is, in the doctor’s best opinion, a prognosis of less than six months, but we’ve had patients for over two years! As long as they are still appropriate for hospice, they stay in the hospice program. But we’ve admitted patients to our service who still travel and garden and cycle, etc. We want them to be as active as possible for as long as possible. We teach and train both patient and family for the time when they will certainly begin to decline. So we’re their advocate! This is one difference between home health and hospice. In home health, the patient has to be homebound. Not so in hospice. Another myth is that it’s a depressing situation to be in hospice. Quite the contrary. People who gravitate to hospice are usually caring, happy, sensitive people who feel a calling to minister to those who haven’t long to live upon this earth. We love to laugh and do all we can to bring joy and light to a patient’s final days. Yes, we’re comfortable discussing death and dying, but we’re equally qualified to enhance the patient’s final days, as well. A slogan in our office said, “We may not be able to add days to your life, but we can add life to your days.” Still another misconception is that many people are unaware that patients can have in-home hospice. Actually, we can see the patient wherever they reside—in their homes, in an in-patient hospice facility, in assisted living, in a nursing home, or in the hospital. Another myth is that hospice “takes over”. Not true. We help manage the patient’s care. But the bulk of our job is teaching families how to care for the patient, not having us move in to take over. To those who are unsure of whether hospice is right for you, I urge you to try it. Most people don’t realize that you can get out of hospice just by picking up the phone and calling the office. That’s it! However, I must say that hardly anyone actually does that. Once they experience the peace and calm of having hospice personnel around, they rarely want to leave our service, even though they know they can.

8. How do you answer the question "Where is God in all of this?" (when people are grieving and suffering)

Some, even believers, find themselves asking, “If God is so good, why is this happening to me?” “What did I do to deserve this?” “Why isn’t God answering my prayers?” “Where is God in all of this?” This is not a question easily answered in one paragraph. I wrote a whole book about it aptly titled, Where is God in All of This?. But Chapter 6 of Sunsets also deals with these important questions. And the bottom line answer is, He’s right in the midst of it! We do not have an impotent God too weak and ineffective to answer our prayers. But we need to keep in mind that sometimes the answer to our prayers is, “No.” Nor do we have a God so vengeful and mean that He sends pain and sorrow our way capriciously. No, our Lord is wise, loving and just. He upholds us with His righteous right hand, according to Psalm 63:8. But since the Fall of Man in the Garden of Eden, sin and death have been a part of our world. And the result is that we age, we get sick, and we die. But God is sovereign over all of it. He determines our length of days, the means by which we die, and the effect our passing has on our loved ones. But we are told repeatedly in the scriptures that there will be two results of our suffering—good for us, and glory to God. Our pain has purpose! It is not frivolous. We may not always understand the “whys” but then we don’t have to understand them in order to trust and obey God. “And we know that in all things God works for the good of those who love him, who have been called according to his purpose,” Romans 8:28.

9. How do you comfort a family when an unbeliever dies?

This can be a tough issue. You can’t very well say, without providing false hope, “Well, at least now his suffering is over,” or “He’s in a better place now.” What I’ve done is to make the comfort directed more toward the family than the patient. I’ll say things like, “You were there for them the whole way,” or “You did such an outstanding job of caring for them,” or even, “I’m hoping that now you will finally be able to have a life again!” One of my favorite responses is, “You did a wonderful job. Now you need to take care of yourself as well as you took care of your loved one. Get some rest. Do things you haven’t been able to do for so long.” It depends on the situation.

10. Have you ever had to apply these truths to your own life, or is your experience merely going through this with others?

As a matter of fact, just as I was doing my final rewrite on Sunsets, my dear brother, John, was diagnosed with cancer. John and I were amazingly close, so this hit me hard. As I walked this road with my brother, I was so thankful that my mind and heart were already saturated with these truths. Losing him was the most painful event of my life, but I was able to go through it with my faith and trust intact. I never questioned God’s goodness. I never for an instant felt abandoned by Him. I believe this was due to the work I’d already invested in learning the scriptures. When my book, It’s Not Fair!, was released my husband had just been diagnosed with prostate cancer. By God’s grace, he is now cancer-free, but even in those dark times after his diagnosis leading to surgery, I never once thought it was unfair that God was having us walk down that path. When, Where is God in All of This? came out, my husband had just retired and we were on the precipice of a new era of our lives where we were faced with living on a pension plus social security and didn’t know just how that would work. The reason I went through all these potentially upsetting things without despair is not because I’m such a wonderful, strong and together human being. It was because I belong to the King of Kings, because my mind is continually refreshed by the truths of His word, and because He’s kept His promise to be with me in the midst of every heartache. His presence is all we need to get through any trial or upheaval in our lives. That’s why my biggest piece of advice to anyone who is suffering is to dive into the Word, my friends. Remind yourself of Who our God is. Refresh your soul by rehearsing the comforting promises of a loving God to His wayward children. That’s the only way to fully place the situations in your own life into a bigger, spiritual perspective that will allow you to walk through life with joy, confidence, faith and contentment, even through the tears of adversity.

Learn more about Sunsets: Reflections for Life's Final Journey.

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