This may be done when the person was initially diagnosed. Inherited heart conditions services offer specialist assessment and investigations, genetic counselling and testing. Additionally signpost your patient to the British Heart Foundation Genetic Information Service , which offers information and support and helps with referrals.
BHF British Heart Foundation booklet for professionals: Difficulty conversations — talking to people with heart failure about the end of life.
NICE guideline. Chronic heart failure in adults: diagnosis and management. BHF booklet for patients: Your guide to heart failure. BHF website: Information for patients. BHF resource for patients: Heart failure personal record helps patients to track medicines, log test results and track progress.
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The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public. Published date: 1 June Review date: 1 April Home Healthcare professionals Palliative Care Knowledge Zone Caring for someone with heart failure at the end of life Caring for someone with heart failure towards the end of life Please be aware - this information is for healthcare professionals.
On this page:. Useful resources Key points. It can also be caused by: heart valve problems congenital heart disease a viral infection affecting the heart muscle an abnormal heart rhythm some types of chemotherapy excess alcohol or recreational drugs. Heart failure can be chronic or acute: Acute heart failure is when the symptoms of heart failure come on suddenly, when heart failure is diagnosed for the first time, or if symptoms suddenly become worse during long-term chronic heart failure.
Chronic heart failure is when someone has heart failure as a long-term condition. The symptoms of heart failure include: fatigue extreme tiredness breathlessness, either when resting or being active swelling of the legs, ankles, feet or abdomen as a result of fluid retention. Both palliative and hospice care focus on the whole person, including their physical, emotional, social, and spiritual needs. Hospice is a form of palliative care. Similarly, people with end-stage heart failure may need to decide when to disable certain medical devices implanted in their body:.
In addition, the palliative or hospice team can assist with navigating insurance issues, creating advance directives such as a living will , and other practical matters.
And they can support family caregivers through education, respite services, and grief counseling. Palliative and hospice care can relieve suffering from heart-failure symptoms, including pain, breathlessness, depression, insomnia, and fear. This can be done through medication, therapies, counseling, and other supports. Hospice and palliative care can help a patient feel at peace, emotionally and spiritually. And hospice can enable a serene and dignified death.
The palliative or hospice team can include a physician, nurse, social worker, certified home health aide, spiritual support counselor, trained volunteers, bereavement support, and complementary therapies such as massage. Hospice care is typically given where the patient lives — whether at home or in an assisted living facility or nursing home.
A key benefit of hospice is that it often enables the person to die at home, which is the wish of most people. There were two main reasons for choosing 70 years as the lower age cut-off. Secondly, the clinical observation of the treating geriatricians in the recruitment hospitals indicated that end of life issues become more relevant in patients aged 70 years and older.
This question has proved useful for identifying patients with a potential need for palliative care [ 18 ]. Initial information regarding the study was provided to potential participants verbally and via an information sheet by the treating senior physician. Of 29 patients approached after having been identified by a negative response to the surprise question, 25 agreed to participate in the study 9 in Hannover, 16 in Heidelberg. At this point, the interviewer approached the patients and provided further information regarding the study.
After giving these individuals the opportunity to ask any outstanding questions and explaining that they were permitted to withdraw from the study at any time, participants were asked to provide written informed consent and agree to the recording of interviews. The study was approved by the local research ethics committee Hannover Medical School, Nr. If the patient desired, an informal carer e. All interviews were conducted by the first author KK.
Comprehensive field notes were taken during the interview to gather data on non-verbal reactions and the course of the interview in order to facilitate contextualisation of the data.
A clinical assessment was performed once at the recruitment stage by the geriatric physician, which included the NYHA status and the frailty status, which was measured using the CHSA Clinical Frailty Scale [ 17 ]. Information about the involved professional carer e. The guide was developed based on instruments previously used in other qualitative studies [ 6 , 15 , 19 , 20 ]. It was planned to conduct follow-up interviews at approximately three-month intervals, for up to seven interviews over a period of 18 months per patient T0-T6.
Of the 25 patients recruited, five refused to attend follow-up interviews, two were cognitively unable to respond, and eight died. Interviews were audio-recorded and transcribed verbatim. All transcripts were checked with the audio file and thoroughly anonymised. The iterative analysis started after the first interviews. The qualitative analysis was performed using an inductive approach according to the principles of Grounded Theory [ 21 ].
First coding steps were conducted independently by two researchers and subsequently synthesised. During the process, codes were subsumed alongside main categories into subcategories. Additionally, we conducted in-depth analysis of relevant passages to identify latent structures of meaning.
Frequent team meetings with experts in public health, nursing care, sociology, general medicine and palliative care intensified reflection on the data. Our first impression when reading the field notes and interview material was that heart failure is not the prime concern of the interviewees.
Further analysis of the material revealed two main themes, both of which were divided into various sub-categories: A Patient understanding of disease and prognosis and B Delivery of health care [Table 2 ].
Patient statements revealed different levels of perspectives related to heart failure, ranging from descriptions of their illness a adaption to changing conditions b , appraisal of their own quality of life c , and their handling of information regarding their illness d. The patients described various experiences with symptoms of heart failure, in particular, limitations such as shortness of breath, dizziness, and restrictions in activities of daily living.
Frequently, they did not perceive heart failure as a life-limiting, chronic disease with a long-term course, but rather as a disease with acute life-threatening events. The patients often believed their condition was a result of their old age and not a genuine illness. Medical definitions and personal experiences may diverge: Despite their specific diagnosis and treatment, the patients reported feeling well. Consequently, they may play down their symptoms and not take their medications.
Yes, I have that! Oh, yeah! You know, now … now I have it under control. You know, I have never taken any pills. But if I say I take my tablets, that … I do not do that anymore. The loss of familiar concepts of self, such as body image and mental integrity, appear to constitute the main problem.
Thus, the interviewees considered their mobility and participation in everyday life to be of greater importance than heart failure or any other disease itself. And still, the heart pain is not so severe that I would say that my heart is the top priority.
They stop me from walking or running properly, which is actually worse than the shortness of breath …. This patient, a very old man who moved to a nursing home for a while to recover physically, had hoped to be able to live at home with his wife again.
The creatinine levels deteriorated rapidly. That means weekly visits for, say, haemodialysis, which takes four to five hours, and to the doctor or for treatment … coming back here or wherever. But that is my main … my main problem. That is … you know, my kidney values are very bad, they are still working an average thirty percent. Well, yes, I do notice something… um, my heart force levels are still at fifty percent.
The big problem in my case is water retention throughout the body. Psycho-emotional strategies and practical assistance in daily life help the patients to adapt to physical and mental changes in their lives. Depending on individual attitudes in dealing with disease and age-related restrictions, these changes may be accepted or resisted.
In some cases, physical and emotional boundaries were reluctantly adopted with time and led to a conscious approach to dealing with heart disease. But [laughs] not yet. Not yet. Another strategy used by the participants to come to terms more easily with their situation and to be able to better enjoy the present is to play down any discomfort. The disease duration can contribute to the perception that the illness and associated impairments are familiar and should not be given special attention any longer:.
This is perhaps through the many years that I already have, even from my young years, I was always a bit limited. The patients reported various anxieties that may manifest as the illness progresses, fear of helplessness and uncertainty about future care arrangements. Moreover, the fluctuating course of heart failure with repeated acute incidents and accompanying diseases multimorbidity can provoke the fear of disease progression and deterioration of personal wellbeing.
In particular, the fear of losing mental function, which is expected with aging and the associated loss of independence, dominates in many cases:. That is one thing that would be difficult for me. I think not only for us old people, but also for.. For those who largely appreciate their quality of life despite restricted physical wellbeing, aspects such as personality, a more positive attitude and social activity play an important role.
This contrasts with older patients who complain of a significant loss of quality of life. Correlations were found between restriction of personal autonomy and the loss of enthusiasm for life. The loss of personal independence can lead to a feeling of absence of will and increasingly shifts the focus on basic care needs. This was observed in the case of a very old woman who was increasingly losing her will to live after moving into a nursing home, as identified at the fourth interview:.
Overall, the interviewed cardiac failure patients had little knowledge about their condition and its limited prognosis. The subjective need for information varies according to disease state and individual preferences. Thus, the majority of their information was gained directly via doctor-patient communication. Various motives regarding the wish to obtain information and knowledge or not related to how the patients dealt with their actual experience of the disease and were not inevitably related to the need to know medical facts.
At T0, one patient joked about how she had refused information regarding her illness in the beginning due to fears; after experiencing a time of severe stages of the disease, she later seemed chastened and somewhat wiser, although she was still frightened of bad news.
Especially in emergency situations such as acute shortness of breath, the patients and their relatives reported that they had little idea regarding the course of action in such emergency situations. The feeling of boredom was also described: time can no longer be used in a fulfilling way because the necessary energy, mobility and means are lacking.
In such cases, the patients longed for rather than rejected death and viewed life as having been lived. A main wish of the interviewed persons was to be able to carry out daily tasks without pain.
Particularly when pain and suffering dominate everyday life, the desire to die increases over time and, after a certain point, some interviewees were considering shortening their life. Nevertheless, the participants also expressed fears associated with the end of life. The wish for a peaceful, quick death without suffering was mentioned consistently.
Although most patients expressed a strong preference to die at home, specialist palliative care and facilities e. At the same time, some of the interviewees did not reject hospitalisation if pain became unbearable. Given the limited lifetime remaining, the respondents thought it particularly relevant that arrangements be made before they passed away. SGLT2 inhibitors can assist glucose control in patients with diabetes and can reduce the risk of heart complications.
Doctors will also prescribe beta-blockers to support these efforts and control the heart rate. Some patients may also require physical intervention to treat CHF. Doctors may advocate the use of implantable cardiac defibrillators ICDs and cardiac resynchronization therapy CRT when required. In the later stages of heart failure, doctors may recommend surgery to insert a left ventricular assisted device LVAD into the heart.
An LVAD is a pump that helps the heart muscle contract. These devices can be a permanent solution for patients with heart failure. A full heart transplant may also be an option if the person is a good candidate for the operation. Doctors will likely recommend making lifestyle changes to minimize the impact of CHF. This will often happen regardless of the stage a person is at or other treatments they will follow. They include:. Eating a healthful, varied diet and getting regular exercise is always a good idea, but it can be essential for people with CHF.
Doctors may recommend that people with CHF eliminate excess salt sodium from their diet, as it causes the body to retain fluids. They may also suggest reducing alcohol intake and limiting fluid intake. Regular aerobic exercise may improve heart health and lead to a better quality of life in patients with CHF. Guidance states that physical conditioning can improve quality of life, exercise tolerance, and reduce hospitalization rates in patients with heart failure.
However, an increase in physical activity may not be practical for all patients. Aerobic exercise is any activity that elevates the heart rate and breathing rate.
Activities include swimming, cycling, or jogging. If you have CHF, check with your doctor before doing any exercise.
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