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By: Dr. Laura Mantine
Parkinson’s disease (PD) is caused by the loss of dopamine-producing nerve cells within the brain. The loss of dopamine causes symptoms like stiffness, slow movements, balance problems, and depression. There are certain specific motor symptoms that accompany Parkinson’s disease. A resting tremor happens when a body part, usually a hand or foot, shakes slightly when a person is not using it. Bradykinesia is when movements are extremely slow, and patients may have freezing episodes which are temporary, involuntary periods where a person is unable to move. A PD patient may also experience changes in speech, smaller handwriting due to difficulties performing repetitive motions, and a “masked” face due to a loss of facial expression. Patients are also at an increased risk of falls from a combination of poor balance and severe stiffness. A PD patient may develop difficulty swallowing which can lead to weight loss, malnutrition, dehydration, and pneumonia.
There are also non-motor symptoms that are present in Parkinson’s disease. Parkinson’s dementia is a significant, permanent decline in attention, memory, and problem-solving that impairs daily life. A patient may develop hallucinations or delusions throughout their disease course which can lead to increased caregiver stress. Patients may also suffer from severe constipation, urinary problems, and sleep disorders that affect their quality of life.
As a progressive disease, Parkinson’s disease symptoms will slowly worsen over time. While PD affects people in unique ways, there are typical patterns of progression, defined by five stages. In stage 1 and stage 2 of Parkinson’s, patients may experience mild shaking and stiffness. As the disease advances into stages 3 and 4, loss of balance and slowness of movement begin to impair daily functioning. Stage 5 is the final, most debilitating stage of PD. In this stage, patients are wheelchair- or bedbound and require 24-hour nursing care. Patients are said to have end-stage Parkinson’s disease at stages 4 and 5 of the disease. In end-stage Parkinson’s disease, symptoms are so severe that medication stops working well, and patients require full-time caregiver assistance. Eventually, end-stage PD patients become candidates for hospice care, a service that focuses on easing symptoms and improving comfort at the end of life.
There are no formal PD eligibility guidelines for determining when a hospice referral should be made, and there is no definite timeline when it comes to the final stages of Parkinson’s disease. However, hospice care is available to patients who are expected to live six months or less. Doctors and hospice agencies will consider factors relevant to PD like a patient’s history of falls, hospitalizations, withdrawal from activities, inability to perform self-care, and lack of benefit from medication. There are very general hospice guidelines intended to cover a broad-spectrum of neurological disorders. The guidelines for neurological illnesses state that patients must meet one of the following to be eligible for hospice: critically impaired breathing or rapid disease progression in the past year.
Critically impaired breathing is unlikely to be applicable in Parkinson’s disease. Primary respiratory problems are not typical in advanced PD. The second criterion, evidence of rapid disease progression in the prior year, tends to be more useful for patients with end-stage PD. A rapid disease progression means that patients are bedridden, have unintelligible speech, require a modified diet, and need major assistance with activities of daily living. Nutritional impairment is common in end-stage PD. Patients are unable to maintain sufficient oral intake and experience weight loss and dehydration. Life-threatening complications that may occur in end-stage PD include recurrent aspiration pneumonia and pressure ulcers of the skin.
Hospice care is an extra layer of support to help care for loved ones with end-stage Parkinson’s disease. The goal of hospice care is to optimize comfort and ease physical, emotional, and mental suffering during the dying process. Members of a hospice care team include a doctor, nurse, social worker, and home health aide. Most patients with PD die from the same diseases such as heart disease, stroke, and cancer, that others do. As such, hospice care may be considered even before a patient with PD reaches the end stages of their disease. Deciding when it is time to enter hospice care can be a difficult decision for a person and their loved ones. However, being admitted to hospice can ensure a person and their caregivers have access to a variety of services that are needed.
References:
“Eligibility for End-Stage Parkinson’s Disease Hospice Care.” By Colleen Doherty, MD. Published on October 24, 2021. Medically reviewed by Isaac O. Opole, MD, PhD. https://www.verywellhealth.com.
“The Role of Hospice in Parkinson’s.” Parkinson’s Foundation. 2018. https://www.parkinson.org.
By Jacquelyn Buffo, MS, LPC, CAADC
Losing a loved one to a terminal illness is one of the most painful experiences you can go through. The loss of a spouse or partner is traumatic for many people, and the grief journey can feel overwhelming, confusing, and painful. However, each person grieves and works through the grieving process at their own pace and in their own way. If you are grieving the loss of a partner or spouse, you are not alone. The month of April is Bereaved Spouses Awareness Month, observed since 2008. Bereaved Spouses Awareness Month provides support and resources for bereaved spouses.
The difficulty of losing a spouse is followed by a grieving process that can be challenging for many people. Grief is a process and includes many different types of symptoms, some more severe than others. Feelings such as shock, sadness, numbness, and even guilt can occur after losing a spouse. Your experiences of grief may be different than others, and it is dependent upon factors specific to you. Grief can present as intense emotions and can also present in behaviors.
For example, bereaved spouses may experience:
There is no right or wrong way to grieve, and support and help are available to you. An available resource along your journey of bereavement is hospice care. Hospice can help spouses prepare for the impending loss of a loved one. The hospice’s bereavement team can also help spouses after a patient passes. The mission of hospice care is to deliver compassionate, quality care to individuals with terminal illnesses and support the families through the caregiving phase and bereavement process.
Many spouses spend a significant amount of time and energy caring for and tending to their ill partners. But unfortunately, they may overlook their own needs and feelings during this time. Utilizing the hospice team as a source of support can help spouses tend to their emotions and needs when it is difficult.
If you are struggling with the loss of a loved one, it is vital to get the help and support you need. First, talk to a trusted family member or friend about what you’re going through. Loved ones can be strong sources of validation, support, and compassion. You can also talk to your doctor if you notice a change in behavior and mood or if you are having difficulty performing the normal activities of daily living, such as showering regularly and eating. Your doctor may be able to provide you with medication and can also provide you with referrals to a grief counselor or support group near you.
Sources:
Hospice is a special type of care for those living with a terminal illness and a life expectancy of six months or less, should the disease run its natural course. It uses a team approach in which the care team focuses on the patient’s physical, emotional, and spiritual needs.
Although over 1 million patients and families experienced the value of hospice firsthand in 2018 alone*, there are still a lot of misconceptions about hospice care.
* https://www.nhpco.org/hospice-facts-figures/
A big part of hospice is education. We want to do all we can to educate our communities about the services hospice offers and how they can benefit you and your loved ones, starting with some common misconceptions.
Many people think that when they choose hospice, it means they are giving up hope. We have this instinct to fight and fight until the very end, and to stop fighting means to give up. However, hospice isn’t giving up. It is giving yourself and your loved ones permission to stop running back and forth to the hospital and stop the exhausting curative treatments. Hospice allows patients to be comfortable and at peace and to have the best quality of life possible.
Many people believe hospice is a place you must move to when you elect services. This is not the case. Hospice services can be provided wherever you call home – including your residence or a skilled nursing facility. The majority of patients on hospice services live at their home and continue to live at their home throughout their time on hospice.
Another common misconception about hospice is that it will cost you and your family a lot of money. The truth is actually quite the opposite. Hospice does not cost you anything out of pocket. It is covered by Medicare, Medicaid, Veterans’ benefits, and most private insurances.
This includes not only the cost of nursing visits, but also the cost of medications and medical supplies.
Learn more about how hospice is paid for.
The goal of hospice is to keep the patient’s pain under control and to keep them as comfortable as possible. While pain and symptom management can include giving the patient morphine and other comfort medications, not all patients will need it.
Hospice does not expedite death and does not help patients die. In fact, we sometimes find that patients live longer than expected when they choose to receive the support of hospice services. Hospice is about ensuring the patient is no longer suffering from the symptoms of their terminal illness. It keeps them comfortable by managing pain and symptoms, such as shortness of breath or restlessness.
This could not be further from the truth. When you elect hospice, you (or your power of attorney) are always in control. You are in the driver’s seat, and hospice is here to support you. If you decide you no longer want the support of hospice, you can make that decision. And if you are ready for hospice again at a later time, you decide that, too.
Hospice will not tell you what to do. You tell hospice what your care goals are and what you want. If you do not want certain medications, they will not be forced on you. The hospice care team will work with you to honor your wishes in every aspect of your care.
Many people think hospice is only for the very end of a patient’s life, but that’s not the case. Although hospice is for patients who have a life expectancy of six months or less (should the disease run its natural course), you can be on hospice for much longer than that – and many patients are.
Hospice patients are assessed regularly during each benefit period. As long as they continue to meet Medicare criteria, patients can continue to receive hospice support, indefinitely.
You do not have to give up your primary care physician (PCP) when you are admitted to hospice. In fact, your PCP is a very important part of the hospice care team. The hospice team will work with your physician to be sure they are updated on your condition and any changes in your care plan.
It is commonly thought that only cancer patients can receive hospice support. However, hospice is for any patient with any terminal diagnosis. Other common diagnoses of hospice patients are end-stage lung diseases (such as COPD or emphysema), heart disease, kidney disease, Parkinson’s, ALS, Alzheimer’s and other Dementias. Patients who have multiple chronic illnesses, that together result in their health being more fragile, also qualify for hospice services.
These are only some of the most common misconceptions about hospice care. If you are still feeling unsure of whether you or your loved one qualify for hospice or if it’s the right choice for you, please feel free to give us a call. We are happy to answer any questions you may have about the services we provide.
Just because you call, doesn’t mean you have to elect hospice. It never hurts to ask questions and learn more. If it’s not the right time now, maybe it will be later. And by calling now, you’ll have all the information you need to make an informed decision when the time is right.
By: Dr. Laura Mantine
The cervix is the organ that provides an opening between the vagina and the uterus. Normally, old or damaged cells in a woman’s cervix will stop dividing and are replaced by healthy, young cells. Cervical dysplasia occurs when these old or damaged cells continue to divide in the superficial layer of the cervix. When cervical dysplasia is not treated, it can grow and spread into the deeper tissues of the cervix, developing into cervical cancer. Cervical cancer is a common malignant tumor of the female reproductive system. In the world, cervical cancer is the third most common type of cancer. However, the use of Pap smear screening has made it far less common in the United States.
Regular Pap smear screening tests can detect cervical dysplasia long before it develops into cancer. Cervical dysplasia is 100% treatable when identified early. Once cervical cancer has developed, the prognosis varies depending on the cancer’s stage of advancement as well as a woman’s age, general health status and comorbid conditions. It generally does not produce any symptoms in its earliest stages. When symptoms do occur, they may indicate that the cancer has progressed to more advanced stages. Symptoms may include abnormal vaginal bleeding or discharge, low back or pelvic pain, pain during intercourse and periods that are longer and heavier than usual.
Treatment of cervical cancer begins with seeking regular medical care throughout a woman’s life. Regular medical care allows a health care professional to best evaluate risks of developing cervical cancer, perform Pap smear screening, and promptly order further diagnostic testing as needed. The goal of cervical cancer treatment is to permanently cure the cancer resulting in complete remission of the disease. Cervical cancer treatment plans are multifaceted and individualized to the type and stage of the cancer with consideration of a patient’s coexisting diseases or conditions. Treatment of cervical cancer or cervical dysplasia may include a combination of surgery, chemotherapy or radiation.
Cervical cancer can lead to life-threatening complications especially if they go undetected and untreated. Complications are caused by an abnormal rapid growth of old or damaged cells in the cervix that can spread to other organs, such as the lungs, bladder, liver and intestines. Over time, the spread of cancer interferes with organ function and vital body processes. Serious complications can include recurring cervical cancer after treatment and infertility due to treatment.
In cases in which cervical cancer has progressed to an advanced stage and has become unresponsive to treatment, the goal shifts away from curing the disease and focuses on symptom management. Hospice care is available to help people in their last phases of an incurable illness live as fully and comfortably as possible. Hospice care for a patient with advanced cancer focuses on quality of life and is designed to address a wide range of symptoms including pain, poor appetite, shortness of breath, nausea and vomiting. Hospice patients with advanced cancer experience fewer hospitalizations, emergency calls and invasive procedures. Hospice patients have lower costs of care and greater likelihood of dying in their preferred setting, compared to patients not referred to hospice. Hospice will provide medications and supplies and provide inpatient care when a patient’s symptoms cannot be managed at home. Hospice can also provide around-the-clock care in the home to manage acute symptoms if needed. Also, a hospice clinician is accessible any time of day or night to ensure symptoms are managed as soon as possible. Lastly, hospice care also provides emotional support that benefits advanced cancer patients and their families. Timely and appropriate identification of hospice eligible patients increases the likelihood that patients and their families will benefit from compassionate, end-of-life care.
References:
National Hospice and Palliative Care Organization, NHPCO Facts and Figures, 2018 Edition. Retrieved from: https://www.nhpco.org/research/
American Cancer Society, Cancer Facts & Figures 2019 Retrieved from: https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2019.html
What are Palliative Care and Hospice Care? 2019. National Institute on Aging. Retrieved from: https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care
Teno, et al. (2004). Family perspectives on end-of-life care at the last place of care. JAMA, 7;291(1):88-93
People often shy away from talking about end-of-life wishes. In fact, the Conversation Project found that although 92% of people feel it’s important to discuss end-of-life wishes, only 32% actually do. But it doesn’t have to be a scary topic that you avoid. In fact, it’s incredibly important to have the discussion.
As your loved one grows older, they may be hesitant to talk about their end-of-life wishes. And you may not want to bring it up because it forces you to face the fact that they won’t be here forever. Trust us, we get it. However, it is incredibly important to talk about it. Here’s why.
End-of-life conversations give us the chance to die well. What does that mean? It means our wishes are known and followed, and we have the opportunity to live our life – right up to the end – the way we choose to.
By discussing their end-of-life wishes, you will have a better understanding of how they want things to happen. This will prevent you from needing to try to guess or figure it out on your own.
That brings us to our next point. Knowing what a person wants makes it easier on those caring for them. If you discuss it with your loved one, you don’t have to worry about making the right decisions on their behalf because you already know what they want. If you don’t discuss it, you may worry if you are doing right by them. Talking about what they want and having a clear plan eliminates this pressure.
It’s also not uncommon – in situations where the patient becomes unresponsive, such as in a medical emergency – for the family to argue over what the right decision is. This just creates added and unnecessary stress and trauma for everyone. All of which can be avoided by knowing and understanding your loved one’s wishes ahead of time.
Your loved one may already know what their end-of-life wishes are. They might just be unsure of how to bring it up. Maybe they just need you to start the conversation. But how do you?
This Conversation Starter Guide is a wonderful tool to help us get the conversation started. It includes prompts to answer to help cover all the bases. Encourage your loved one to fill it out, with you or on their own. Then, you can sit down together and talk about their answers. If you have this guide printed out, you can take your own notes and save it so you are prepared.
It’s important to keep the conversation going. Our wishes can change over time so it’s important to keep one another updated.
End-of-life planning isn’t about dying – it’s about living. Understanding your loved one’s end-of-life wishes allows you to understand how they want to live their last months, weeks, and days. So, start the conversation and keep it going.
A life-limiting illness comes with a lot of difficult decisions to consider. One of those decisions is when it may be time to consider hospice care. This can be an intimidating decision to make, so we are sharing some tips to help you determine when the time is right.
Hospice is an interdisciplinary approach to end-of-life care. When a patient and their family choose hospice, they are choosing to switch the focus from curative treatment to comfort care. This simply means the goal is now to manage the patient’s pain and other symptoms to keep them as comfortable as possible. Symptoms hospice can help treat include pain, shortness of breath, and restlessness.
Many people think hospice is a place. However, this is not true. Hospice care can be provided wherever the patient calls home, including their own home or a nursing facility.
Patients are generally considered to be eligible for hospice when a physician determines they have a life expectancy of six months or less.
One misconception is that when you choose hospice, you are giving up. This is not at all the case. Hospice is not just about the dying process, it’s about the end-stage of the life-limiting illness, as well. When you choose hospice for your loved one, you are choosing quality of life for them. No more treatments that make them feel sick in attempt to buy them more time. Just focusing on making sure they are comfortable and at peace for whatever time they have.
So how do you know it’s the right time to consider hospice? Below are some of the common indicators:
Remember, these indicators are just guidelines and do not replace a physician’s evaluation. If you think it may be time for hospice, talk to your doctor.
The holiday season is here, and what is a time of joy and togetherness for most can be a time full of sadness and grief for others. The holidays are meant to be spent with those we love, so how can you be expected to feel like celebrating when someone you love is no longer there to celebrate with you?
If you are missing a loved one this holiday season, here are some tips to help you take a step back from the grief and survive the holidays.
Let’s be honest, they are everywhere during the holidays. Preparing for these triggers and having a plan for coping with them can sometimes make the triggers more manageable as you encounter them.
Plan to get some space from the holiday chaos if you need it. Being surrounded by family and friends is great, but all at once can be emotionally overwhelming and hard to overcome. Don’t feel guilty about your grief. It is important to be conscious of your limits and take some time to recollect yourself.
The holidays are a time to gather together, eat good food, and share what we’re thankful for. If you’ve recently lost a loved one, it can be hard to feel thankful when you are grieving. Although you may be focusing on the loss, try to remember the good things that relationship brought into your life. Search for that gratitude.
Acknowledge that things will be different this year. Some holiday traditions will remind you of your lost loved one, but it is okay to limit which of these you allow yourself to remember or not. Take time to prepare for which traditions will make you happy and which will overwhelm you.
Although you may normally be the one to host during the holidays, this year may be too much to take on alone after losing your loved one. Accept help when it’s offered. Remember that there is no shame in saying yes. Those who love you want to help.
The holidays can be hard for those who have recently lost a loved one. Grief can be especially unavoidable during these times, but it is important to remember that you can still feel joy through the grief. Taking these tips into account can help you prepare for that grief and make your holidays more enjoyable.
By: Laura Mantine, MD
Chronic lung disease is the 4th most common cause of death among older adults in the United States. More than 3 million people worldwide died of COPD in 2015, representing 6% of all deaths that year. People dying from COPD frequently experience difficult and uncomfortable symptoms that lead to distress and panic. They commonly have disabling respiratory symptoms including severe breathlessness, limited tolerance for activity, and intractable coughing. They are also usually oxygen dependent, often experience anorexia with weight loss, cachexia, and ultimately become dependent on others for their activities of daily living.
Despite the symptomatic needs of individuals dying from end-stage COPD, only 30% of individuals receive hospice care before death. It is not clear why the rate of hospice use for patients with COPD is so low, but several explanations have been offered. The most important may be that few patients with severe COPD have discussed end-of-life planning with their clinician. Furthermore, many patients and clinicians do not view COPD as a terminal illness and feel it is more chronic in nature. Also, there may be a lack of awareness that patients enrolled in hospice can continue to receive treatments for COPD. Due to the fluctuating course of COPD, it is often difficult to accurately estimate a patient’s life expectancy which may contribute to low hospice utilization rates.
While end-of-life-care is an appropriate topic to discuss with all patients, several factors have been suggested that should prompt a discussion with patients who have severe COPD. One factor is simply that a clinician would not be surprised if a patient with COPD were to die within the next 6-12 months. A clinician should consider hospice referral in a patient with COPD if they are dyspneic at rest or with minimal exertion, have progressed to the point where they spend most of their days at home, have experienced repeated ED visits (one or more each quarter) due to infection or episodes of respiratory failure, have endured repeated hospitalizations (one or more each quarter) and no longer wish to be admitted and the patient no longer wishes to be intubated.
While these laboratory studies may be helpful to the clinician when considering patient appropriateness for hospice services, they are not required for patient admission.
COPD is a significant health issue around the world. It is ultimately a fatal disease and patients are under-referred to hospice care. Hospice, with its strong interdisciplinary approach, has been shown to improve quality of life for patients with end-stage respiratory disorders like COPD.
Hospice Eligibility for Patients with COPD. Serena J. Scott, MD, Barry D. Weiss, MD, Ellyn Lee, MD, College of Medicine, University of Arizona. https://uofazcenteronaging.com. June 2017.
When to refer patients with advanced COPD to palliative care services. Rebecca Strutt. Breathe (Sheff). 2020 Sep; 16(3): 200061.
Referral to palliative care in COPD and other chronic diseases: A population-based study. Kim Beernaert; Joachim Cohen; Luc Deliens; Dirk Devroey; Katrien Vanthomme; Koen Pardon; Lieve Van den Block. Respiratory Medicine. Volume 107. Issue 11, P1731-1739. November 1, 2013.
Joint Commission-accredited hospices are the partner of choice throughout the care continuum because of their deep abiding commitment to quality end-of-life care. Apreva Hospice is one of the few hospices in San Diego County with this distinct and honorable title. An accreditation from Joint Commission shows dedication to the optimum patient experience, commitment to strong interdisciplinary care management, and a robust patient safety initiative.
Apreva Hospice prides itself by partnering with the We Honor Veterans Program. We have a team of highly-trained individuals who work with our Veteran patients during their time of need.