Hospice: A Dignified End to a Dignified Life

Can't believe it's been so long since I updated this. Sorry. I have so much going on in my life. Still dedicated to this, though. It's more about knowing what to write about, or being inspired. The biggest thing that has happened recently has been sending a well-known person to hospice. It's always sad when this happens. I am currently in school right now, and one of my classmates is a hospice nurse, so it's nice to be able to connect with her and learn about how (her) hospice is run. It's also nice to see that the level of caring continues for these patients.

When people go to hospice, it is often a complicated journey there. Unfortunately, many doctors wait until much to late to discuss end-of-life issues with their patients. It's also unfortunate, though, that many people don't discuss end-of-life issues with their families. It's best to let your family know what you want done at the end of your life. Many health care workers recommend you have these conversations long before you are ever diagnosed with a serious or terminal illness. While I see the validity of this, I also understand why many wait until the diagnosis to make these decisions. There are pros and cons to this.

Pros

• Your choices may change once you are diagnosed. 
• You may originally say you want everything done, but once you know how terminal the illness really is, you may decide you just want to be comfortable. 

or

• You may say you don't want anything done, then find out the disease has a high cure rate, so you change your mind and decide to try. (Often people will have CPR and be vented once and decide after that they no longer want those as an option.)
• You may not be fully educated about your options (CPR, meds, intubation, etc.) and therefore can't make a valid decision until this is brought up to you. 

Cons

• You never know when you'll be in a life-altering accident that may cause you to be unable to share your wishes with the medical staff.
• At diagnosis of a serious illness, it is best to face it with a positive outlook if you expect positive outcomes. Focusing on end-of-life decisions at that time often cause you to have a poor outlook, because you are forced to think of the "What if.."'s. 
• If your illness causes you to be unable to make decisions, you don't know that your family will make the same choices you would want. 

There are many more pros and cons, but these are very basic and cover what I see frequently. What I also frequently see is family members (children, spouses) not able to cope with the end of their loved one's life and therefore will go against the patient's wishes and decide to make them a full code/full treatment. This is something I ethically do not agree with. I think it is the job of every health care team member to make sure family and patient are on the same page with what the patient wants. If this means the family needs help to cope, so be it. Most hospitals offer that. Chaplain services, the number one go-to person when people need help coping, are for both the patient and their family. I enjoy working at a facility that has so many chaplains that we can really lean on this for the betterment of our patients. 

What is Hospice?

In my eyes, hospice is where someone goes to die peacefully. Hospice allows people to stop treatment (chemo, radiation, hefty antibiotics with ill side effects) and instead be given medications to help make them comfortable. They can eat and drink whatever they want. If they hurt, they are given pain medicine. If they are anxious, they are given anxiety medicine. If they are struggling to breathe, they are not forced to breathe, instead they are given medicine to make it easier to breathe (decrease work of breathing). It is a respectable death. It's not ugly. It's usually not sad. It is expected. It is patient-centered. It allows for family support. If a patient is being treated at home, family can still take vacations or breaks from the heavy work. They can take the patient to a hospital or hospice center (whichever the hospice service advises them to do) and the patient will be left for respite care - which means they receive the same care but the family is able to take a break. It may sound harsh to say the family needs a break while their family member is dying, but this is work that is very emotional and takes a toll on families. They aren't used to this. They aren't used to seeing people die. This is their loved one. They often even need encouraged to take the break. Hospice is about comfort, respect, and dignity. 

Breast Cancer Awareness

October is here now and that means breast cancer awareness is at the forefront. Many of my friends have already shared their Facebook statuses with the fight for awareness, which pleases me. However, shouldn't every month be about awareness? Breast cancer can be found anytime. 

I don't think I'll ever forget a conversation with one of our oncologists. Not only did he hilariously give us a recommendation to check ourselves daily (overkill!), but he also stressed to us all that breast cancer is something that can hit at any age and more often has no obvious genetic link. So while it is important for women over 40 to get their regular mammograms and for those with a known family history to be extra diligent in checks, it is just as important for all us women to do regular, monthly self-breast exams and follow up with our doctors about any lumps found. 

Follow up can be very scary and doctors don't always take the under 40 crowd serious, but I urge all to not just give in. I went through this recently with a friend. She actually had to see 2 specialists because the first just told her, "You're under 30 (she was 29 1/2), so your risk is very low." He went on to more or less say that if she had seen him just a few months later, at age 30, he would test more. Her doctor and I said that was unacceptable and she was sent to a better specialist who not only did further testing (besides a manual exam), but did well explaining what she was experiencing and when to worry. While the wait stressed me out, it was much more relaxing to know what was really going on. 

Let's Talk About Sickle Cell!

Did you know September is Sickle Cell Awareness Month? Probably not if you don't have or treat Sickle Cell Disease.

Do you know someone with Sickle Cell Disease? You may not realize it, but you actually probably do.

Thanks to Ryan Clark, a Pittsburgh Steelers player, this disease has gotten some attention in the media lately. Though Clark does not have Sickle Cell Disease, he has the Sickle Cell trait, which, in him, becomes aggravated at higher elevations. This suffrage was brought to the forefront after the Steelers played the Denver Broncos in Denver back in 2007, when he became very sick and ended up having to have both his spleen and gall bladder removed as a result of the strain and stress of the elevation on his body.  This is something that is common for anyone who suffers the disease.

So what exactly is Sickle Cell Disease (SCD)?
It is a condition which mostly affects African-Americans, though others can suffer it as well. It is a condition which affects the red blood cells of a sufferer. Whereas a normal red blood cell is circular in shape, a sickle cell is sickled or crescent-shaped, as seen in the pictures below. (Wikipedia really is good, it gave us that picture!)

  

As can also be seen in the first image, normal red cells flow easily through our vascular system, bending to fit through capillaries, allowing for the normal exchange of oxygen and carbon dioxide between our vasculature and tissues. Unfortunately, sickle cells do not bend as easily (they're also sticky, unlike RBCs) and, as a result, clog up the capillary space. This causes intense pain, as tissues are not able to get rid of carbon dioxide nor receive the vital oxygen they need to survive. (Who knew oxygen was SO important?!) 

Now, if these cells are not so prominent, then they don't cause so many problems, but if they are, the pain the clogging causes is referred to as a Sickle Cell Crisis, or SCC in the hematology world. So what do we do to treat this? As there are no cures at this time, we treat the symptoms and try to make the blood flow better. This is done first by giving pain medication - the pain is very intense. We also give plenty of fluids, both orally and intravenously. Depending on hemoglobin and hematocrit levels, we may or may not give blood as well. At my facility, we don't do this until the hemoglobin is less than 5 (normal is 12-17) or the patient is symptomatic (signs/symptoms of low oxygenation, shortness of breath, etc.). Another treatment is heat to the affected area (via heat packs or a heating pad), as this helps to open up the blood vessels and allow for easier passage of blood through the vasculature; it also helps with the pain. We encourage early ambulation to promote the blood flow and also offer oxygen if the oxygen saturation level is low (a common place for the SCC to occur is in the chest). 

So how does one prevent a SCC and stay out of the hospital? It's not entirely easy to say. There are things SCD sufferers can do to help, but they still almost always end up with the occasional hospitalization. 

• First off, it's recommended to avoid alcohol (isn't that recommended for almost every disease prevention/treatment?). 
• Also, it is important to not smoke - while smoking has it's own normal repercussions, in SCD, the effects are heightened, especially in that smoking restricts blood flow. In SCD, we want to encourage blood flow. 
• Adding to this, we say to stay warm - cold weather and even air conditioning can cause constriction of the blood vessels, again restricting flow. Though we can't control the weather, we can control how we dress, so carry a sweater inside and stay bundled outside. 
• Next, drink lots and lots of water. One site recommends drinking at least 96 ounces (that's more than 2 liters!) of water a day during warm weather. Again, this helps to promote blood flow. - One teacher and great mentor I had in my elementary through high school days would carry around a liter bottle with her and make sure to drink at least that much during the day and then drink that much at home/outside of school. (This is something I, a person with normal RBCs, have done as well. Water is good for all of us to drink.)
• As always, it is recommended to get exercise. Not so much that the body is stressed, but enough that the body is healthy. 
• Mentioning stress, now's a good time to mention that SCD sufferers should avoid stress. While this isn't easy to do, it should be a goal. Daily stress is normal, but getting plenty of sleep helps to decrease stress on the body. (Another tip - enough sleep!) 
• Avoid infection. Infection causes stress on the body as well. Some SCD patients are put on antibiotics as a preventative, especially in the younger years when the immune system is not yet fully developed. 

That's definitely not an all-inclusive list. There is much more people can do to prevent a crisis, but these are the basics. 

Want a little lesson? Free of charge! -- The Sickle Cell trait comes via a gene mutation that occurred as a result of malaria. This is why many of the sufferers of this disease are of African descent or from some other tropical climate where malaria is (or was) common. Therefore, those with Sickle Cell Disease are actually immune to malaria. Who knew?! There are actually different forms and, therefore, different severities of the disease. Those of African descent generally have the most severe form compared to those of Indian, Middle-Eastern, or South American descent. Milder forms don't generally result in hospitalization, although I have known of a person with the trait to be hospitalized during pregnancy because of the stress on the body. (Ryan Clark, he only has the trait, not the full-blown disease. It was the stress of the higher elevation and pushing his body through a professional football game which caused his problems.) 

If you know someone with Sickle Cell Disease, encourage them. Learn from them. And support them.

Want to know even more?! Visit the Sites below. 

US National Library of Medicine

National Heart Lung and Blood Institute

SCDAA

Kid's Health

Medline Plus

American Family Physician

Hospice. What about Palliative Care?

I read a blog post recently about care providers needing more education on end of life care. One of the things this blogger shared was "five reasons end of life discussions are avoided" (Julianna Paradisi). These reasons were taken out of context from a MedScape article. They were: "1. Patients get depressed. 2. The truth kills hope. 3. Hospice or palliative care reduces survival. 4. This talk is not culturally appropriate. 5. Prognosis is unknowable." While many of these "reasons" frustrated me, number three was the most frustrating. 

Unfortunately, a lot of health care professionals don't really know much about hospice or are scared of it themselves. Bring in palliative care, and there is even more confusion/misinformation. 

As the Paradisi blog suggests, we, as nurses (and all licensed medical staff, in my opinion), need education on how to broach the subject of end of life. I was so passionate about this after, that I immediately emailed (and later talked on the phone to) my boss about getting my staff trained in this and asked what I could do to help this happen. 

So, what is hospice? In general, hospice focuses on the last 6-12 months of life. It is a means for offering dignity, comfort, and peace to the end of life. It is not just for patients, it's for their families, too. Hospice may take place as an inpatient (in the hospital or a hospice center) or an outpatient (at home) setting. Some families are equipped to be with their family and care for them in the last months of life, others aren't; some people just don't have family so their options are more limited. Hospice care includes palliative or supportive care. 

So what is palliative care? As mentioned already, palliative care is included in hospice care, however, a patient can receive palliative care without being in hospice. Palliative care is for patients with serious illnesses. Like hospice, it is something that doctors fail to give to their patients until it is almost too late. Many believe palliative care is only for those who are close to death, but I have seen it used in those with chronic illness, such as Crohn's disease. Palliative care is primarily about comfort. 

More to come on these subjects and many more. It's been a busy couple of weeks with school and work. I hope to be able to add more this weekend. 

Also, looking forward to spreading some information about Sickle Cell Disease and Hemophilia, issues that I see at work daily as well as that affect friends of mine. 

Introduction

New blog! Yay!! Who doesn't get excited about these? This first post is just going to serve as an introduction to the idea behind all this.

I have been a nurse in hematology and oncology for over two years now and interested in this field of medicine for much, much longer. There are so many diseases present in this field and, as with all diseases, we are always looking for cures. With oncology (cancer to those who aren't sure), there are always fundraising efforts to raise awareness or support research to hopefully eradicate it. The hematology world isn't so lucky. While the Leukemia and Lymphoma society is well known and those diseases have some awareness, hemophilia and sickle cell disease don't have as much awareness. Generally, if you or someone you know is not suffering from these, you probably have no idea what they even are or what they entail in the health care world.

My goal of this blog is to raise awareness and educate about all the diseases that I come across in my daily work life. I also aim to discuss key issues and even share some opinions that arise following my reading of other blogs that I follow.

Looking forward to where this goes. I certainly hope it's not just another idea I have that doesn't come to fruition.