Oakhaven End of Life Workshop

Today I visited Oakhaven Hospice for an End of Life workshop where we looked at the different ways the hospice and its association can provide support for patients, carers and families who are facing complex physical, emotional and practical difficulties arising from advanced progressive life limiting illness.

Oakhaven Hospice

Oakhaven Hospice

We looked at what a hospice really means and despite the many pre-conceptions, it is actually a place that feels alive and focusses on the positive; I was also quite surprised to find that the place is filled with lots of laughter and joy despite the morbidity of their situations. Oakhaven alone provides care for approximately 100,000 people living in the New Forest and Waterside areas.

We looked at a quote that I thought was very true, especially from personal experiences; it was

“How people die remains in the memory of those who live on.”

–          Dame Cicely Saunders

If a person has a pleasant peaceful death and has fully accepted or tried to accept what is happening to them then it is a much happier time for everyone. However, when the treatment of that person is very poor and they are so scared for what is to come for them and what they are leaving behind, then the experience can be much more unpleasant. Oakhaven Hospice provides counseling for patients and their families in order to prepare them for the inevitable and that can really help them to pass more peacefully.

After the introduction to the work of the hospice, we split up into smaller groups and took a tour of the hospice. I had already visited when I helped out at the Family Fun Day, helping to raise money, but this time we were able to speak to staff and patients along the way. We talked to a nurse from the care agency who would take regular checks of patients in their home and determine whether they should come to the hospice and what sort of care they would need.

Then we visited the in-patient unit where we looked at one of the rooms and all of facilities that were available to anyone coming in to stay. They said that a patient would usually stay between 1-2 weeks before going home again or deciding to stay to die. The lady in charge said that she thought dying is the last choice we ever make which I think is beautiful. She said that it is very similar to fainting as in that moment when you think you are going to be pulled into unconsciousness; you have the power to will yourself back even if it is for a just a few more seconds. She told us that she has had patients hold on, despite the odds, until their family came to visit them or hold off until their family member left the room for a couple of minutes to go to the toilet. Perhaps they would not have been able to willing leave them if they were right there. I found all of the stories she told us quite fascinating.

After that, we saw the chapel and talked with a member of the chaplaincy, a physiotherapist and someone from the team that welcomed volunteers. After talking with them, I had the privilege to talk with one of the patients carers during lunch and it was very interesting to hear of how her life changed from just a single turn of events. It came to my attention that the concept of total care is the importance of being devoted to the person rather than the disease; all of the patients were very comfortable talking about their illnesses and preferred that we talk to them directly about it rather than keeping it to ourselves.

As well as all of this, we also discussed what it would be like if we had a disease that could prevent us from doing the day to day things, not just from being  physically unable but from the emotional trauma that can also haunt a person, and we also learnt about having difficult conversations with patients and the importance of communication.

I feel like today was a very valuable experience and I am glad that I attended; hopefully I can take what I have learnt into my future and become a more compassionate doctor.

Alzheimer’s Disease

Today there was an article on the BBC News website that claimed that copper was a contributor to the Alzheimer’s disease. According to an article in Proceedings of the National Academy of Sciences they are in very early stages of testing (they are still looking at the effects on mice). However, they have found that the amount of copper given to the mice in their water has affected the aging brain vessels as it interfered with the production of a protein called amyloid-β. This could lead to the accumulation of the protein over the blood–brain barrier (BBB) which is neurotoxic (poisonous to nerve tissue).

One of the characteristics of Alzheimer’s disease is the formation of plaques of amyloid in the dying brain. Despite this, Dr Eric Karran, from Alzheimer’s Research UK, said:

“While the findings present clues to how copper could contribute to features of Alzheimer’s in mice, the results will need replicating in further studies. It is too early to know how normal exposure to copper could be influencing the development or progression of Alzheimer’s in people.”

This article got me thinking; other than the fact that alzheimer’s is a form of dimentia, I don’t really know that much about it and therefore I decided to look into it further.

Alzheimer’s disease was named after a German psychiatrist and neuropathologist Alois Alzheimer in 1906 and is a disease that will eventually lead to death and is predicted to affect 1 in 85 people globally by 2050.

Alzheimer’s disease is a progressive brain disorder that causes a gradual loss of higher brain functions, such as memory, language skills, and perception of time and space; eventually these lead to the inability to care for oneself. Unfortunately, these symptoms are irreversible.

A primary cause of Alzheimer’s is the deposits of the protein amyloid-β which forms plaques in the brain. When many amyloid-β peptides (short chains of amino acid monomers linked by peptide (amide) bonds) come together, they form an insoluble piece of protein called an amyloid plaque.

amyloid plaques

amyloid plaques

The exact cause for Alzheimer’s is unknown, however, there are a number of factors that can increase the risk of it occurring:

  • increasing age
  • a family history of the disease
  • previous severe head injuries
  • lifestyle conditions associated with vascular disease

Because Alzheimer’s disease gets worse as it progresses, symptoms are also more severe the further along it has progressed.

Early symptoms include:

  • minor memory problems
  • difficulty saying the right words

These symptoms can lead to:

  • disorientation
  • personality changes
  • behavioural changes

There is no single test to identify Alzheimer’s disease but hopefully in the future, according to this article, there may possibly be.

Advanced medical imaging such as computed tomography (CT) or magnetic resonance imaging (MRI), and with single-photon emission computed tomography (SPECT) or positron emission tomography (PET) can be used to help exclude other cerebral pathology or subtypes of dementia. Moreover, it may predict conversion from prodromal (early) stages (mild cognitive impairment) to Alzheimer’s disease.

PET scan of the brain

PET scan of the brain

It is usually diagnosed clinically based upon patient history, collateral history of relatives, and clinical observations based upon the presence of neurological and neuropsychological features.

differences between the brains with and without alzheimer's

differences between the brain with and without Alzheimer’s

Alzheimer’s is a disease that can be hard both on the patient and the family of the patient and I hope that I will never have to go through a situation where I have to see a family member who is not really there. I highly respect those who do.

Thanks again,

Rachel.