Life – Terror. Ecstasy. Fight. Denial. Flight. Failure. PAIN. Forgiveness. Reconciliation. Hope. Love. Peace – Death.
I have just returned form visiting ‘our Claire’ in Salford Royal (Hospital) my second visit in as many weeks. She has been in and out of hospital for around 12 months but, due to Covid, health & safety issues it has only been possible for me to visit these past couple of weeks.
Claire has a form of Dementia, a fast acting variant that has taken hold, rapidly and dramatically in just a few months and with complications, she now has sepsis.
She is very poorly and her treatment (officially) is categorised as end of life, palliative care. She is awaiting transfer to a suitable nursing home, where she will die. I doubt if she will actually make it to any nursing home.
She has been unwell for the past 18 months ish? It is the speed of her deterioration that has been the hardest thing to accept, it has been rapid, relentless and extremely difficult for her daughter and son to comprehend (and myself).
I have previously posted about my relationship with Claire as, growing up, she was pivotal in my early years and is like a big sister to both myself and my blood ‘sister’ Carol. Time. Life. Honestly? In recent years, post-my own family I haven’t seen as much of her as I used to growing up.
I am struggling with seeing her, looking so old, so poorly, asleep (semiconscious?) She is refusing (not accepting) nutrition and is currently without intravenous fluids. She is awake, less and less each day day and whilst she is asleep, she does not look, peaceful or comfortable? She appears to be dreaming, but not ‘pleasant’ dreams? Agitated, mumbling, occasionally grimacing punctuated by the odd sore sounding cough and uncomfortable (involuntary), movements of an arm or sometimes a leg?
I have experienced this kind of ‘end of life’ situation (in varying degrees and levels) before. Recently, with Arthur (my father in law), Richard (a young friend and further back, my little Ant. It does not get any easier each time and it has prompted me to consider my own ‘palliative’ situation as ‘eventually’, I will be in the same situation as Claire, Arthur & my Little Ant.
What does Palliative, (end of life) care mean?
Who decides what it means and what, if any are the choices, options and alternatives?
Almost 4 years to the day (2017) post radical proctectomy pathology revealed that my cancer had advanced (metastasised) and I was now in a ‘no cure’ palliative care situation.
My posh consultant, Mr Weston did not discus anything in detail just the words ‘no cure situation’ and ‘palliative care’. Those words resonated through my ‘very being’, my first thought (question) was ‘how long’ do I have?
Reluctant to tell you (incase they get it wrong)?
Many doctors have experience in diagnosing a terminal illness and estimating life expectancy. For example doctors have to do this when they process benefit forms for ‘state benefits’ & ‘insurance companies’ for terminally ill people. Prognosis is not an exact science. Research shows doctors are more likely to overestimate rather than underestimate life expectancy.
In my case it was up to me to research the stats, analyse the evidence, I have covered that in more detail in earlier posts (30% Club). One thing I quickly discovered is how important it is to understand that ‘end of life care’ & ‘palliative care’ are not the same thing?
You may start palliative care at any stage of your illness, even as soon as you receive a diagnosis and begin treatment. You don’t have to wait until your disease has reached an advanced stage or when you’re in the final months of life. In fact, the earlier you start palliative care, the better.
Palliative care involves treating symptoms, such as pain or nausea, without necessarily addressing the underlying cause of disease. Simply put, it is symptom management and it does not mean ‘no longer seeking or treating for a cure’? It can be both or a combination of.
Understanding the actual reasoning, the nuts and bolts behind palliative care can help you better understand the difference between this and end of life care:
- To relieve symptoms and pain associated with your condition or the treatment stemming from it.
- To help you and your loved ones understand that death is a natural part of life
- Not to promote dying or attempt to prevent it, but to take the journey with you
- Assist in psychological (and in some cases spiritual) care
- Support you so that you live your best life possible
Palliative care is often confused with end of life care.
Palliative care also extends to family members.
You may want to involve your family in any decision making processes. While both forms of care are implemented towards the end of life and offer care, treatment and support for you and your family, there is one significant difference.
Palliative care can begin at any time after diagnosis, and some plans are in place for years. In contrast, end of life care is usually implemented within what is expected to be your final year of life. While palliative care can be, and often is, included in an end of life care plan (known as end of life palliative care), they are not the same thing.
The overlap between these two terms can be confusing. In simplest terms, a patient can pursue a cure while receiving palliative care, both approaches (should) emphasize person-centered care and easing uncomfortable or distressing symptoms. Many misconceptions about disease management approaches cause patients to become uneasy when healthcare professionals broach either topic.
This type of care is available for a multitude of diagnoses, all of which impact a person’s life differently, an exact time-frame shouldn’t be given. It is wise to discuss with your doctor when this type of care may be useful. However, you alone know how you feel and what level of support you would like or need; so the decision is ultimately yours.
Remember, you are (should be) in control of the palliative care process, and the aim behind it is to help you enjoy as fulfilling a life as practical, providing support in every possible way throughout your journey.
“End of life care” also covers legal issues to help you plan ahead for your future care. These include creating a lasting power of attorney so the person or people of your choice can make decisions about your care if you are no longer able to do so yourself.
Choices about care and treatment at the end of life should be made while the patient is able to make them
A patient may wish to receive all possible treatments, only some treatments, or no treatment at all in the last days of life. These decisions may be written down ahead of time in an advance directive, such as a living will.
Advance directive is the general term for different types of legal documents that describe the treatment or care a patient wishes to receive or not receive when he or she is no longer able to speak their wishes.
Studies have shown that cancer patients who have end-of-life discussions with their doctors choose to have fewer procedures, such as resuscitation or the use of a ventilator. Reports from their caregivers show that these patients live as long as patients who choose to have more procedures and that they have a better quality of life in their last days.
The emotions of patients and caregivers are closely connected.
Patients and caregivers share the distress of cancer, with the caregiver’s distress sometimes being greater than the patient’s. Since caregiver suffering can affect the patient’s well-being and the caregiver’s adjustment to loss, early and constant support of the caregiver is very important.
Planning palliative care
It might help to consider it as ‘stages’, five stages of palliative care?
Splitting it up into stages or phases and understanding these may help you decide when might be the right time to start the process for you?
Stage one: This is where the initial plan is created; it should be flexible to provide the right care as your illness evolves. Healthcare professionals, you and your family, are often involved in making this initial plan.
Stage two: Medical social workers, interdisciplinary teams and if you are religious, spiritual a ‘professional to provide emotional and spiritual care for you and your family.
Stage three: Nurses and physicians work together at this point of the care plan to ensure you maintain as much independence as possible. It may be necessary at this stage to install home health aides and accept assistance from nursing carers with daily activities that you are beginning to struggle with.
Stage four: This stage involves arranging inpatient care at a hospital or hospice if wanted. If you don’t want this, but still require more help from medical professionals than previously, live in care can be arranged so that you always get the support you need, without moving out of your comfort zone. This stage can also encompass end of life care.
Stage five: This involves bereavement support for your family and friends and is usually utilised for a year.
End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you.
You have the right to express your wishes about where you would like to receive care and where you want to die. You can receive end of life care at home, or in care homes, hospices or hospitals, depending on your needs and preference.
People who are approaching the end of life are entitled to high-quality care, wherever they’re being cared for.
Who Provides end of live and or palliative care?
Different health and social care professionals may be involved in your end of life care, depending on your needs. For example, hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors may all be involved, as well as social care staff, chaplains (of all faiths or none), physiotherapists, occupational therapists or complementary therapists.
If you are being cared for at home or in a care home, your GP has overall responsibility for your care. Community nurses usually visit you at home, and family and friends may be closely involved in caring for you too.
Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.
When does end of life care begin?
End of life care should begin when you need it and may last a few days, or for months or years. People in lots of different situations can benefit from end of life care. Some of them may be expected to die within the next few hours or days. Others receive end of life care over many months.
People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this is not always possible to predict. This includes people whose death is imminent, as well as people who:
- have an advanced incurable illness, such as cancer, dementia or motor neurone disease
- are generally frail and have co-existing conditions that mean they are expected to die within 12 months
- have existing conditions if they are at risk of dying from a sudden crisis in their condition
- have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke
The National Institute for Health and Care Excellence (NICE) has published guidance on the care of dying adults in the last days of life. This guidance covers how to manage common symptoms, as well as dignity and respect for the dying person, their relatives and carers.
How do I find out about end of life care services in my area?
If you are approaching the end of life, or caring for someone who is, and you want to find out about the care and support available, your first step is to speak to your GP or to call the number your healthcare professionals have given you.
Part of their job is to help you understand which services are available locally. You can ask about all sorts of help – for instance, there may be particular night-time services they can tell you about. You can also search for specific types of care services near you.
Hospice care is appropriate any time after a doctor has estimated that a patient has six months or less left to live, and both doctor and patient have decided to move from active curative treatment to a regimen more focussed on quality of life. While hospice patients forego further treatment. Hospice incorporates palliation of symptoms.
Palliative care involves treating symptoms, such as pain or nausea, without necessarily addressing the underlying cause of disease.
Simply put, it is symptom management.
Thanks for reading, and good luck