Česky
If you look up the website for domestic hospices (1), you will find a number of similar and repetitive phrases, including this one: 'Home hospice care is provided to terminally ill patients in the environment of their home among their loved ones.'
I suppose this sentence may raise further questions - what kind of care is it, what is hospice, what is mobile hospice, who runs it and how, how can care be arranged for your loved one when needed, etc.?
Hospice is about palliative care. This word, previously relatively unknown, is now used more frequently. "Palliative" in Latin means relieving. But for an oncologist, which I am, the term palliative treatment has never been foreign. In oncology treatment planning, we always decide what treatment to give a patient. One of the choices is palliative treatment, where the patient's well-being (quality of life) comes first when we know we can't or won't cure the tumor. The second choice is radical treatment, where there is a likelihood that we can cure the tumour. In this, the patient will usually go through a difficult and burdensome treatment. In the care of Charity Pardubice's mobile hospice, most patients are diagnosed with cancer and have completed cancer treatment, which is the first condition where we can care for them in the mobile hospice.
Oncologist Prof. MUDr. Jiří Vorlíček, CSc. MUDr. Ondřej Sláma, Ph.D., who were among the first to be certified in this field in 2005. Even in Europe, the field is not yet completely common, and in 2014 it was established in only 15 of the 46 European countries - Czech Republic, Denmark, Finland, France, Germany, Ireland, Italy, Lithuania, Malta, Norway, Poland, Portugal, Romania, Slovakia and Great Britain.
Mobile hospice, unlike inpatient hospice, uses the patient's home environment. The doctor and nurse travel to the patient's home. The system also works this way thanks to the advances of modern times - mobile phones and cars, without which it really wouldn't work. Hospice, a previously almost unknown term, was first mentioned in 1996. At that time, MUDr. Marie Svatošová opened the first "stone" hospice in Bohemia in Červený Kostelec. This was the first time that a family was allowed to be at the bedside of a dying person, to stay overnight in their room, to help with their care. In our region, the founding and opening of the inpatient hospice "Smíření" in Chrudim in 2010 was due to the local doctors MUDr. Marie Blažková and the current hospice director MUDr. Jiří Košt'ál (3). It was the twelfth hospice out of the current fifteen in the country. Most of the hospices have their patron saints in their name - St. Agnes, St. Lazarus, St. Joseph, St. Stephen, on St. Hill, St. Elizabeth, St. John Nepomuk Neumann, St. Luke, the Good Shepherd. Today the word hospice is more common than it was a few years ago, but it still sometimes frightens the dying and the family. Even relatives are afraid to say the word in front of the dying. So sometimes, given the circumstances, we advise their loved ones to graciously use another term - such as "private hospital."
In the hospice "Reconciliation" in Chrudim I first served on weekends for a year. The hospice is newly built, modern and efficiently equipped, and the care for the dying is of a high standard. During a study visit to Copenhagen about ten years ago, we were told that in Denmark 50% of patients die in hospitals, and even 60% in the case of cancer patients. This means that it is not always easy to manage the last care of a cancer patient at home, even in Denmark.
One of the meanings of the Latin word 'caritas' is preciousness. This word has been transformed into the word 'charity', which refers to charity based on Christian love of neighbour. The Regional Charity of Pardubice is one of 348 parish, town and regional Charities in our country (4). The one in Pardubice is probably the most important institution of its kind in its region. It is the only one operating mobile hospice care.
How does mobile hospice care work?
The conditions for taking a patient into this care are:
- completion of cancer treatment,
- the family understands that the patient will die at home,
- the need for a family member to be present with the dying person for 24 hours.
The condition of being aware that the patient is going to die at home seems clear when requesting care. However, it is often a challenge, as this realisation takes time and cannot happen overnight.
The patient is then visited in his or her home environment by a nurse and doctor. The patient's condition and difficulties - pain, shortness of breath, nausea - are ascertained, mobility, nutritional status, hydration, the amount of medication he or she is still taking, psychological state, and the possibility of borrowing important aids (positioning bed, oxygenator, anodyne dispenser) is offered. We also assess family relationships and the family's ability to provide day care. The nurse arranges the next visit to the patient, which may be several times a day. Unlike home health care, mobile hospice provides telephone consultations at night, and a nurse may even come to the family to perform the service. In addition, medical visits are made as needed, and consultations about the patient's condition and treatment happen by phone as needed, even several times a day. The prescription of analgesics, strong painkillers, anti-vomiting drugs, anxiolytics, antidepressants as well as liquid nutrition can be arranged by our doctor. This includes infusion therapy if beneficial. The charity also provides nursing, psychological and social worker care.
Terminal (end-of-life) care is often demanding and physically and mentally debilitating for the family if it lasts for several weeks, even when the patient's family uses the help of the mobile hospice staff. If the caregiver begins to look worse than the patient, then we recommend and assist in an inpatient hospice facility. So far, the mobile hospice care has been subsidised by the Charity, so it has been free to the family. On January 1, 2018, Decree No. 353/2017 of the Ministry of Health came into force, setting point values, the amount of reimbursement for covered services and regulatory limitations for 2018. This decree contains the following provision: "For reimbursed services provided by providers in specialty 926 - home palliative care for patients in terminal condition according to the list of procedures, the point value for this specialty is set at CZK 1 for adult patients for 30 days, and CZK 0.50 thereafter."
The listed specialty 926 includes only 2 procedures:
80090 - aggregated home palliative care procedure - clinically unstable patient, procedure time 1440
80091 - Aggregate home palliative care procedure - clinically unstable patient with severe symptoms, performance time 1440.
In the work of mobile hospice, we encounter pitfalls that physicians and nurses working in inpatient facilities have not usually encountered. I find it most unfortunate when the family of the dying person wants to manage the treatment themselves. The problem is usually with the morphine that they don't want to give to the asphyxiated patient because, after all, morphine is the last thing and is only for pain, and what if he gets used to it. It's all a big mistake. A breathless patient has no other relief from breathlessness than morphine. Morphine reduces excessive respiratory effort and ventilatory reactions to hypoxia and also reduces anxiety. So unknowingly the family torments the dying by gradually suffocating. I recommend reading the myths about morphine (5). We also experience that the family cannot accept that death is coming and takes the dying person to the clinic the day before to see if anything can be done. Not eating is a sign of life passing away, but we, the healthy, cannot understand this and worry unnecessarily about the dying not eating. But we can't avoid complaints, usually from the side of the family that didn't care for the dying person at all. At other times, however, we experience moments of devoted love with the family, when a man marries a dying woman so that he can take care of her minor child.
Dying is a more frequent theme today, for death is part of life. Marie Svatosová, M.D., uttered an extraordinarily true sentence, " ... sometimes it is healthier to die."
Let me conclude with a quote to ponder:
"The hardest thing is to die properly. It's a test that no one escapes. Pray also for strength for this test."
"He who has never suffered knows not how to comfort."
"Don't seek death, death will find you. But seek the way that makes death fulfilling."
(Dag Hammarskjöld, 1905-1961, Swedish writer and diplomat, Secretary-General of the United Nations)
References:
1. http://www.hospice.cz/
2. https://www.paliativnimedicina.cz/
3. http://www.smireni.cz/
4. http://pardubice.charita.cz/
5. http://www.umirani.cz/rady-a-informace/myty-o-opioidech
